Air as a gift

There are things that you can’t put under a Christmas tree, but it is quite possible to give them. For example, time and air to take a breath

We help professional nannies to help families with deaf -blind children collected 1 199 887 R needed 976,625 r

The collection of funds is over

Gel is eight years old. This year she behaved well. I went to school. I made friends. I started playing the accordion. That is, she quite deserved a gift for the New Year. But she never wrote to Santa Claus. And it is unlikely to be. After all, this is not accepted in her family.

Impossible letters

“And we are not lovers of generally accepted holidays,” explains Julia, the mother of Angelina. “We do not celebrate like everyone else. If you have lived a good day, this is your holiday. We do not wait for dates, do not postpone for later. Here we wanted to give something to Gel-we give. I wanted my husband to bring a flower to the house - brings. Or for me to sit with candles - I light up. Write letters with requests for gifts for a particular day ... and how to write them? "

Julia and Angelina Photo: Julia Skorobogatova for TD

Gel does not know how to write. And read. He does not know letters and words. Because he does not even know what everything that is designated by words looks. Even if she wanted to make something to herself as a gift, she could not explain this in any way ... Gel was born blind. And at five, she was also diagnosed with deafness.

Julia teaches Angelina to dance movements photo: Julia Skorobogatova for TD

“I still can’t stop thinking about how much time we missed,” Julia sighs. “I felt that there were deviations in development, I was a teacher in education. Yes, the child is blind, but why doesn't it say? What is the reason? We all clinics in Klin proceeded. How many letters I wrote to the doctors! I thought at least someone should figure it out. But everyone was silent. And who was not silent, for some reason did not send to check the hearing. Why?"

Weigh the steps

In his eight gels is a happy owner of the hearing aid. She now hears. But because of the lost years, he does not understand what he hears. She is not familiar with an adult speech, although she knows when her mother calls her to eat, when he is to wash, combing her hair, get dressed, go out of need and so on. The girl expresses her emotions and desires with a few gestures. The most frequent is an outstretched hand with a palm up. Impatience. Tasty tea would be as soon as possible. Would play as soon as possible.

Angelina is hiding in a box of toys photo: Julia Skorobogatova for TD

Gel does not see that her eight -year -old, like her, the rocking chair had already had a lot and snapped. But she is still the same fluffy on the rim of the seat and the same swinging. And it's nice. Reminds of the plane.

In 2017, thanks to the invitation of the “community of families of the deaf-blind” and the Co-Union Foundation, the family managed to escape to the summer camp in Gelendzhik, where experts arranged developing leisure for the same blind, and parents got the opportunity to relax a bit. It was then that Angelina first flew by plane. And she really liked it. As soon as turbulence began, it was flooded with laughter. It seemed to her that she was rolled on a giant rocking chair.

Julia shakes Angelina on a fitness ball photo: Julia Skorobogatova for TD

“For blind men, fluctuations, air movements are very important. These sensations are available to them - and they are most susceptible to them. When we were told that Gelie had no hearing, we were surprised at the first moment: why did she always react so sensitively to our movements? Another baby: they laid her, sleeps, only someone will pass by the crib-once, fascinated, pulls the arms. Older became - always runs to the hallway when dad comes from work. We thought - hears. It turned out later that this is a reaction to vibration, to air fluctuations. She “weigns” steps. He feels where I am, what I am doing, with whom I communicate. Let such children not be given something, but there are things that they have developed in a completely surprising way. ”

Angelina listens to music sounding from a toy phone photo: Julia Skorobogatova for TD

When the gel came to school for the first time (the correctional department “Our House” on the basis of the GBOU 1206 near the new rented apartment in Yasenev), the guys had an acquaintance with musical instruments. She chose the accordion. Julia suggests that the girl was fascinated by fur with their powerful and full air life.

Cutting the umbilical cord

Julia hatches plans for an active independent future for Geli. They are not even sitting at home: they go to museums, to exhibitions, to various fairs, where people are kindly tuned and allowed to touch and sniff all sorts of interesting things - from juniper beads to massage rugs. The neighboring metro has a large shopping complex with children's gaming: there is also a frequent guest in a soft room and a trampoline - where it is safe and comfortable. Metro, trolleybuses, buses like her with her rattling move and unexpected turns and braking. And she really likes that mom like these small joint travels.

Angelina lunch after a daytime sleep photo: Julia Skorobogatova for TD

“It is important for us not to stay in the apartment. Of course, she is calm, everything is familiar, safe. But the gel should know what a big world around, how many people, how many are doing. This is our common misfortune-parents of children with disabilities: we are constantly worried that something will happen to us. How are they without us? Therefore, I am getting ready to slowly push the gel away from me. And I sleep my husband: teach Dactil, I’ll stop talking to you at all, so that we all communicate in one “language”. In this sense, great hopes for school. Gel will learn everything. I believe. And then, I see how strong teachers, psychologists, physiotherapists there. I’m working there myself now, ”Julia revives.

Four lives

At a new job, Gelin's mother is only a month. But this month is another “completely different” stage. The first such stage was to move to a wedge from the Smolensk region, from where both Julia and her husband Andrei came from. They got married - and decided to sharply change everything, moved. The second stage was the birth of a daughter. Beloved. Tender. Defenseless in his blindness. She was born very tiny, the whole hospital immediately recognized her, the nurses were called: "Where is our star?" A month in intensive care. Then - home, to a new, incomprehensible life. Because it is impossible to prepare to immediately and forever become an ideal mother for a blindfold baby. The third stage was acquaintance with the "community of families of deaf -blind people."

Angelina tries to play on a flexible piano photo: Julia Skorobogatova for TD

“The hardest thing? Probably when they found out about the hearing. It all fell together: resentment, anger, lack of money. When we began to look for schools, we realized that we had to move to Moscow. And we, you know, are unrealistic for honest people, not like buying an apartment, but also renting something in a decent area. At first, they saved on food. Well, that is, how they saved. Gel, of course, has always been fed. And Andrei always had a dinner of some kind of dinner. And I, yes, sat starving. I could not help, only Andrei earned - and what I could. In the night, at night. It was very difficult. Despair was already approaching. I do not complain, it just really exhausts it: for eight years every day the same thing. And this feeling: when you do not understand your own child. You blame: you are a teacher, how so? You go crazy, do not eat, do not sleep. But there is probably a province from above. A fund appeared in my life - I learned to breathe again. ”

Angelina studies a soft piano photo: Julia Skorobogatova for TD

Julia found out about the Co-Union and Community of the Busculous Families by accident, having talked in a store with a large neighbor. At first, the help was the simplest and most pragmatic. Firstly, medicines. With a pension to parents of children with a disabilities of five thousand rubles and the cost of each monthly drug for gel (and not one) at least 500 rubles, any discount and quota of expensive cost. This is another dinner. Or cinema tickets that gel loves due to the exciting Dolby Surround. And then the community launched a new program: “Professional nannies to help families with blind children.” This allowed Yulia to go to work.

Nanny

While Gel is engaged in school with teachers, Julia in a parallel class is engaged in Gleb. Gleb is a fourth -grader, he has a Down syndrome, he is very sociable and clockwork, and soon Julia and gels will go to visit him. It is not yet clear who is more glad to find new acquaintances who are waiting for this visit with great impatience-mother or daughter, but for both it is important that something new, promising.

Julia is resting in the kitchen, while Angelina listens to the music photo: Julia Skorobogatova for TD

“Let it be small in small steps, but we begin a new life in which there is more independence both with me and at Geli. Firstly, she finds out that there are teachers, they need to be heard, understand and obey. For her, this is a new experience in socialization. Secondly, she lives a lot of household moments without me. Because there is our Helen, our nanny, we so gently call her. Lena accompanies the gel from school, they have lunch, rest, play. And I always know that I can linger at work, because everything is fine at home. Lena is a great fellow, although he is just studying. Just a find. "

Angelina sleeps at home after classes at school photo: Julia Skorobogatova for TD

Any parent knows how difficult it is to find a nanny. Even a “normal” nanny for an ordinary child. What to say about special children. Lena is “Professional Nanny” from the program “Divide” “Communities of the Family of Blaglylikhih”. The program provides for the possibility for parents of children with disabilities to use the help of specially trained people to look after children when there is work or urgent matters. These people know the features of babies and adolescents with a combined violation of hearing and vision, as well as other disorders that often appear “in the kit” with these ailments (from scoliosis and ending with a development lag).

Julia and Angelina Photo: Julia Skorobogatova for TD

Lena, for example, knows what kind of food should be persuaded by the gel to eat not in the usual dick, but in unusual hard (because it is already time, because the school). Lena knows when the gel is rested, and when she must be woken up so that she does not Knock at night. Lena knows what a stretched hand or uterine growl means. And Mom Geli knows that her girlfriend will be all right.

Learn to breathe

“A couple of hours on yourself - the opportunity to tidy up the nerves, exhale, relax. So, with renewed vigor to give himself all of himself to the child, ”says Julia. -I read on the Web that parents of children with disabilities sometimes get tired so much that they are ready to give the kids to correctional boarding schools. Yes, they leave there. I am grateful to God for not allowing me to slide to such a degree of despair. “Angtake” is just a gift. It’s a pity, of course, that there is not enough hours, but I understand everything: there are not enough staff, there is no money. ”

Angelina photo: Julia Skorobogatova for TD

Like other families, the “respite” provides Julia with 360 free hours a year. And for these hours you need money: to pay for the work of the curators of the program, on the wages of "professional nannies", for taxes and travel. On simple and understandable things that will allow the project to work, giving out the most important time at the output. The time to recover, necessary for parents of blinded children as air.

Julia used the word "air" in our conversation 23 times. This air gave her a “respite”. And therefore, this time, the Geli family will meet with new moods. If the Zhdanovs were accepted to write letters to Santa Claus, Julia would have addressed him with one simple request: to arrange a monthly donation to the work of “respite”. Or conjure so that such donations are designed by all adults who behave well this year and also gather in the next.