After the birth of a child with severe disabilities Marina, the wife of priest Andrey Teryaev, opened a kindergarten, which parents, early bezvylazno sitting at home with my kids, felt like a normal family.
Mother Marina Borisovna and son Nicholas
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“It is a complete utopia!” the first thing I heard Marina Teryaeva when I shared the idea to open a non-profit kindergarten for children with disabilities in the city of Togliatti. Marina was able to get a meeting with the mayor, told him about the need for such a centre in the city. Despite skeptical forecasts, in 2014 the kindergarten was opened, a room was allocated for it by the municipality. But all these years, the institution rests solely on the enthusiasm of staff and parents whose children attend kindergarten.
Through the day I was told that the son to survive
Teryaeva the couple have been together for 23 years. They met in high school in the city of Togliatti, where he started to work after graduation Marina in Junior, Andrew a teacher of biology and geography. After a year, got married, and the year was born his eldest daughter, then another daughter.
The young husband had to change jobs in the mid-90s the salary of school was miserable. I pushed around in search of decent work, he graduated from the railway College and began to work on the Vase.
In the early 2000s, Marina opened a private children’s center, and each group was free to take the child with a disability, although at the time not really understand how these children learn. The family moved to the suburbs of Togliatti in a private house, and in 2008 they had the long-awaited son. The boy was with severe disabilities, and family life has changed dramatically.
Marina Teryaeva says:
Nine months I lay with Nicky in the hospital and a day later I said, “He will live”. Imagine my condition?!
People don’t want to think about the disease, to be involved, but from it nobody is insured.
Yes, I myself was like this before the baby was born with cerebral palsy. When you become the person that touched it, you still want to live just like ordinary people.
But, unfortunately, opportunities for the parents of such children for the most part no. They have to stay at home. So I spent five years something will hit the road for a while, and the rest of the time home with the baby. Necessary for him to be all, including specialist in different methods, but it should not be. You’re also a man, need their own implementation.
While lying in the hospital, he restored the Church
By that time in the village where they lived Teryaeva, the temple was not yet. Although the Church was allocated a room – boiler room destroyed the old prison. It seems to be the money was going, and the people came to clear an abandoned building, but somehow it didn’t work out.
Teryaeva – people are deeply religious, and, of course, they wanted their village was the Church. And while my wife and son were in the hospital, Andrew has set for the construction of the temple – all had cleared, made the repairs. Had to work a lot – on the roof there were trees, there was a lot of trash and dirt. In 2009, Andrey Teryaev, he was ordained. Happened all well in the factory where he worked, was a reduction with good payouts, and it gave the family the opportunity to live for several months while preparing for the ordination.
The family Marina all the ancestors on the paternal side were priests, so the decision of her husband she accepted with understanding. Andrew himself wanted to become a priest from his youth. After his ordination he studied at the Samara theological Seminary. Now the priest Andrew dream – to build the same wooden Church, which was earlier in the village of Upper Belozerka, after the construction of the Volga GRES village moved to another place and, of course, without a temple. But the arrival of a small, rather poor, while this is only a dream.
Hysterical vomiting a fountain, and September 1, my daughter, I don’t remember
No family ready for the birth of a child with a disability, and for most parents, such a child is an ordeal. Some parents hope for wonderful healing and actively begin the endless search specialists, new drugs, techniques, all kinds of programs. Others become the hostages of the disease – lose the work, the friends are actually locked in four walls.
To maintain a balance between childcare and a full family life is very difficult for a child with severe disabilities is needed round the clock care. The parents of the child are compelled to seek opportunities for rehabilitation and socialization. Basically, children with disabilities just sit at home – there are no public institutions where they can be a full day without parents.
Marina continues the story:
The first year was very difficult. Nick really couldn’t eat – that no give back, a fountain. I already came to tantrums, constantly whole in the vomit. To even it was impossible to drop off – he was screaming in the car, he had a fever.
Cole was diagnosed with cerebral palsy and epic began its rehabilitation. When he was a year and a half, we first went to Moscow for Vojta therapy. My mother said, “Yes, you of the train kicked – Kohl will throw up everything you eat”. But got a good neighbor in the compartment, helped me. And Vojta therapy the stake really helped the muscle spasms are gone, and the boy began to eat normally.
I realized that to engage with the child all day – what with one thing and another, the fifth, the tenth. And when I read mom on the forum, decided that I do not want to live – just lose my mind.
I have a middle daughter in the first grade, and I don’t remember a single day – even the first of September, I to school went and how her first year in school was, don’t know.
It is a utopia, but it is possible and to put life
Marina came to the conclusion that it is necessary to change something. I looked around, did some thinking and realized that the need for such a center where specialized staff will accompany the child with problems from birth to adulthood, where children with disabilities can communicate, to acquire useful skills. So they just lived a normal life – playing, laughing, happy.
– I thought and thought, and I had a complex project. The family with the birth of the child with developmental disabilities need professional support.
Then right kindergarten, so your child gets socialization and skill, and his mother could have the world around to see and their skills to carry out. And maybe another baby to give birth. We have a lot gave birth to a second child.
As the next stage needs school, then vocational education, some workshops and stuff. And then adult training flats, supported accommodation.
When I do all this in my head made up, wrote a draft, went to his friend, the businessman with the words: “Help me. What do I do? How real is this?” He looked up and said, “It is certainly a utopia, but if you’re willing to put life, then I will help you”. But I have nowhere to go, began to act.
We came with him to the mayor, first from him to us was disbelief, because a lot of different organizations drawn to him. The second time we came to him with a set of first steps: who will do the repair, what equipment to buy, and the mayor agreed, we were given a room free of charge.
First, the municipality has allocated 300 meters, then another, and the center is now almost a thousand squares. But the room was in totally unusable condition, mould on the walls – it was necessary to hold the pipe in the basement, fix the roof, change battery, repair Windows, all the walls completely ripped off, putty, linoleum laying, light to hold.
– The room we received in June 2014, and November 5, we have already opened the first two groups. Then gradually we did the kitchen, and halls, and offices of all sorts. Now we have a full range – says Marina.
Hope, mother of Theodore, pupil of the centre, adds:
– On the way to the garden there were many difficulties. But there was a lot of good people. You know what’s depressing? When you have to look for money, for example, on the sewer pipe, which is a public institution, essentially the balance of the municipality, and this pipe gives money to the priest from the monastery. Moreover, a large amount there appeared, 100 or 150 thousand. And the mayor cuts the ribbon, praise all, said: “well Done”.
We have a few who know what the occupational therapist
As Marina Teryaeva, God gave her this ability – the brain is confined to the solution. It is better not to say what the problem is, because she immediately begins to solve it.
– I’m sometimes not very good. So I can’t say how it is so all to arrange, I just thought, thought.
I was then fortunate enough to meet with German experts, we were visited by a physical therapist from Germany. As it turned out, she has a brother with cerebral palsy at the age of about 50 years. She told how her father in the days when they also did in the country, went to the mayor for help.
She explained how they have these centers all built, and I’m strengthened. When nick was born, I thought that working in the children’s developmental center will continue, but I had to leave.
Later, when I started working, it became clear that we do not know what to do with these kids.
And here Rusfond has announced a competition for training of occupational therapists and physical therapists. The selection was competitive, with all of Russia. But we did not think that I can go, because could not leave Kohl. I had no idea how to do it. Talked to my mom, with my husband.
Husband has blessed me: “All, come on. We’ll manage”. The year I studied in St. Petersburg and received the diploma of the occupational therapist. And met with a professional community, which really changes the level of rehabilitation in Russia. Everyone I know, help me a lot, this is a professional level, because I just gathered and gathered. Now we know what we need, how and where you still need to learn.
Of occupational therapists and now in Russia, and few people understand what this specialist. While in other countries it is the occupational therapist in Alliance with a physical therapist deals with people with disabilities.
It helps to adapt the environment so that the child can meet the necessary life skills to feed himself, even if hands are weak and inactive, to wash, to use the toilet. Baby can learn myself to play, although with a strong spastic his movements are limited.
The occupational therapist helps parents learn how to care for a child with a disability. Picks up the correct child seat for movement, the height and tilt of the table, different devices and more.
When everything is free – it is only a 5-minute enthusiasm
The center has been working for three and a half years. The cost of maintaining one child in the center turns 30-35 thousand rubles, without many additional costs, to the same hardware. Parents are also involved in the detention of children, make 10-12 thousand per month. It is 30%, the remaining 70% is a charitable donation.
The group “Rest” is completely free. Funds for it were collected at a charity concert in the near future money is, and what will happen next is unclear.
Hope, mother of Theodore, says:
– Son is 12 years old, he has a severe form of cerebral palsy “doesn’t serve himself,” it is broken. To five years he was at home. When all of a sudden have the opportunity to drive the boy to a regular kindergarten, it became clear how important it is for him to be around children. We were a group of 20 normal children. Of course, at first everyone was in shock and the parents, children and educators. But it only lasted 3-4 days. Then when he came, the children clapped their hands and shouted to him: “Hey, Fyodor!”
For two years the boy has made great progress emotionally, became more alert, could focus long enough in class. But when Fedya was seven years old, he was again at home in four walls. Of course, we have attracted nurses and different specialists in gymnastics and massage, but were themselves on the verge of moral burnout.
And just at this period I heard about the “solar circle”, he had just opened. I liked that this center will be paid, though cheap, I already knew about myself, that’s free – it’s only five minutes of enthusiasm, then it fades away. When a person spends money, money and some resources, he has responsibility.
Before the birth of Fyodor I had my own firm for the decoration of interiors. Then I had to sell it, but how to live on a disability pension of a child of 12 thousand? And I began privately to make the house familiar. And when the “Solar circle” needed help with builders, repair, my friends supported us.
Marina Teryaeva adds:
– We do not support a dependent position. But I would like that the parental contributions were less 5-7 thousand perfect, because everything is now hard. And if we managed to get subsidies, I would first, increased wages, they have 12-15 thousand is very little for the work done by our colleagues. And then would reduce parental contributions.
In this regard, the state centers will not open
In the field: if you open a commercial garden and you’re there to engage with ordinary children, you will give a subsidy to the opening. If you open a non-commercial garden, and even for children with disabilities, you give nothing, it is not necessary, says Marina Teryaeva.
– When we began to ask, but how others receive subsidies, it was found that in General there is no educational non-profit organization, which is attended by children with disabilities that it is somehow subsidized, such a law for them nobody created. In Russia there is no such precedent, but these organizations appear, therefore, necessary to consider how to subsidize kindergartens, schools for children with disabilities.
Here is a simple preschool given 300 thousand, it is a good subsidy for that kind of money, a lot of things can be bought completely all the furniture to buy. But for organizations like us, there’s nothing not provided.
Our school program is not eligible for accreditation, because we do not give the children certificates. But we can’t get subsidies, because we have no accreditation.
Here we have the opposite, you need to take some kind of law or a draft for such organizations who work for the program for children with moderate mental retardation who do not need to be accredited to the subsidies allocated to them without accreditation and on the basis of license and a program.
We entered in the register of providers of social services. Yet, except a headache, nothing. For all time, how many there are, we have received only one grant of 177 in December last year, the Ministry of social protection. But it was for a specific two-month project, we conducted seminars for specialists of rehabilitation centers and parents. And at the development center we had nothing to spend and had to invite experts and to pay them.
In General, when I compare the kids who train at our center, and the kids that I see when I come to family, even just to help set up the stroller, I realize how far we have come in our center in relation to the children.
Our students are individuals, to respect him. Even the regional Commission for pmpk surprised: children heavy, many obvious mental retardation, but they have some other free, communicative, open.
But the future of the center uncertain. Well, now that there is a grant. But it is given only for projects. And content center must provide ourselves.
We have palliative children, they need an individual tutor. And these children vitally need a special stroller. But no money on them does not. Philanthropists and foundations offer to buy medicines and wheelchairs do not want to buy. Today our stake was lucky – he was very comfortable stroller bought Daniil Sysoev, the Fund that helps the families of priests.
With this attitude of the state to centres such as ours, will not open, so a lot of problems and obstacles. But as the mushrooms grow, commercial and rehabilitation centres, but there are tasks, and the responsibility of others.
The group “Rest” will soon have to close – no money for upkeep. Although this project is necessary for parents so they can have somewhere to go in the evening to be alone or just sleep, yeah and the kids like to stay overnight at the centre in the evening they have tea, games. Parents worried about their children – they remain well-trained professionals.
We want to open a second classroom, a doctor’s office. Need equipment, desks. This means no. I want to start a very important project for early intervention. Besides, our children are almost nowhere to walk to a Playground, too, need a lot of money. Plans and needs have a lot. And we hope for help from the state.
We finally felt like a normal family
Now in the center there are 20 preschoolers and 10 school students. In the group “Rest” twice a week has seven children, until nine o’clock to stay, and once a week three children staying around the clock if parents need some things to do or just relax.
In the center is the office of adaptive physical education, speech therapy, ABA therapy, sensory integration, massage, auditory therapy, Tomatis, recently opened a Suite of social adaptation. The staff of 28 people.
– We have a problem that nobody works – no specialists, – says Marina. – We have to learn everything by yourself. This is a huge expense that almost nobody gives money for nothing.
But in 2017, we won the second competition of presidential grants with the project “Service of assistance to families with children with disabilities” and was able to hold a number of seminars with participation of leading specialists of the country – Ekaterina Klochkova and her team. Now parents and staff – from nurses to teachers – can your children how to move, position.
Hope, mother Theodore:
– We have a very good. The atmosphere is joyful, there is no feeling of abandonment, of hopelessness. Our children need a place where they will wait for a friendly to go where they can feel people. It is beyond words. Fedka wakes up in the morning and immediately: “I, Michelle, have mom or dad to go”, the window shows: “In the garden”.
Saturday and Sunday is very difficult to explain to him that he does not go there. In the evening, when we take it from there, he’s crying, doesn’t want to go home, because there he is interested. There is special equipment. The funds helped us to purchase, for example, expensive comfortable chairs.
Anastasia, mother of Vadim:
– Son is eight years old, he has cerebral palsy. In the centre I work from the opening day, and there goes my son. We got the opportunity to feel more or less normal family. I can give a child in kindergarten, leave it there with peace of mind, because the staff we very good, the staff is constantly trained. Very happy that we can walk like ordinary people, in kindergarten, I can work. I was directly interested in the development of this center, therefore, the work there.
Sorry, but the tendency is such that parents of children with cerebral palsy continue to do some strange rehab, everyone’s gone, waiting for something, although it has long been known that cerebral palsy is not treated. You just have to learn to live with it. I would, of course, to keep such gardens, so that our children could not sit home and not roam, and to live a normal life, with the necessary supporting classes in your city. This is a perfect picture.
Catherine, mother of five Zahara:
The long – awaited child, but at birth the error occurred. The situation is typical, to blame the doctors do not want. Dad was difficult to live through this, and I was left with a child alone. The child has a diagnosis of “cerebral palsy”, but it’s not as bad as first predicted. I’m an active person, worked a lot, did different projects. But after giving birth life changed, it was very difficult, especially the first year. Help from anyone was not, had to be on my own.
Lucky we found out about the kindergarten, and in three years Zach was in a group. The child must go to kindergarten to grow and be further in society. But Zachary could not attend a regular kindergarten, he and fee according to the IPC was written, that it or the group a short stay or visit with one of the parents. I have one male parent, he is always with me and in the store, and different, and if you still will be with him in kindergarten, how I will be able to work?
I don’t believe in short-term rehabilitation, to engage with the child need every day from morning to evening. In this kindergarten the male has the opportunity to develop. And I got the opportunity to go to work. Such kindergartens should be a lot of children with disabilities do not have to sit at home.