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Nothing to worry about. As parents of children with disabilities

Nothing to worry about. As parents of children with disabilities

Why not believe the doctors, what to do if the money set aside for a rainy day, do not help, and how to dance and sing, if you can’t hear

Tamara Balaeva – 14.02.18 22000

The girl who didn’t go to three and a half years old, blind boy with epilepsy and autism and a girl who can’t hear. They go snowboarding, play, swim in the pool and dancing. Just live in Ukraine 156 thousand children with disabilities, but not all of them lead such an active lifestyle.

Laura’s parents, Matthew and Pauline want to make happy their children and therefore help others. The focus, they spoke about why we cannot trust the doctors, what to do if the money set aside for a rainy day, do not help, and how to dance and sing, if you can’t hear.

No need to panic

Elena Vedernikova, mother of 4-year-old Laura, the founder of the inclusive center of creativity and development of children “Fairytale castle”

Laura was born in Israel. On the second or third week already had the neck, although the norm is a month, well slept and ate. When she was four months old, we were going to return to Ukraine. Before leaving, she was vaccinated, the same Ukrainian TDAP (vaccine against diphtheria, tetanus and pertussis. — Trick.) Later I learned that in Ukraine after such vaccinations administered anti-allergic drugs, but in Israel we did not recommend.

After vaccination, Laura was getting worse and worse. In two weeks she gained 2 kg, swollen eyes, had a strong squint. On the 15th day she had first epileptic attack.

In Ukraine began our quest to doctors. Did an ultrasound, went to neurologist, internists, pediatricians, optometrist. The survey did not give results. The year Laura turned into an absolute vegetable, almost did not react to any stimuli. She wasn’t even sitting in a wheelchair, and we propped up her pillows. Handed over analyzes almost every week for viruses and genetic problems. Everything was clean. We have appealed to the Ukrainian, European, Turkish and Israeli doctors. Was remote and visual consultation. One of the doctors immediately said, “a hundred dollars”. Someone did not take the money.

But it was no good. Epistatus (a condition in which epileptic seizures follow one another. — Focus), Laura could last a half hour. The worst thing is that after 15 minutes in this state, the cells begin to die the brain. Now imagine. An ambulance arrived 10 minutes later. Doctors make an injection, the drug must act within 10-15 minutes. It’s already half an hour. If the medication did not work, have to go to the emergency room and it’s another 40 minutes if no traffic.

When Laura turned one, we decided to act themselves. After experimenting, formed for her diet. A month later came the first remission. About four weeks there were no attacks. Two weeks after starting the diet, she sat down, and after another two weeks went, and after another two — could stand, holding hands on the parapet.

“Laura is still my most vulnerable spot. After everything I fear nothing”

Thanks to the diet was 182 days of remission. We started to reduce the number of antiepileptic drugs. The dose was about four blocks a day, we lowered it several times. All told we are jerks, but social services even wrote the statement with the requirement to deprive us of parental rights.

One and a half years Laura began to engage with correctional educators, and two Israeli doctors told us she would never walk and talk. I remember how my husband and I cried at the clinic, and I told him: “I promise you, she’s one hundred percent go! Look, she’s already walking along the supports!”The stage of development occurred close to three years. We went to a new doctor in Kiev, Laura appointed treatment injections, pills, classes, and two months later she went six months later and started speaking.

Now Laura every day working like crazy. Engaged individually and with the group. Always something decomposes, transmits, maps, shows where chickens and dogs. We started to work on such a scheme in October and is already changing the problem, because with previous Laura did.

I don’t usually attend, not to distract. Watching a video or hiding behind the trampoline. But when Laura showed the card and asked who it represented, and she replied, “Mother”, I wept.

In the beginning it was very scary. When he carried her like a rag to the er, I was thinking: “Oh, Let it be vegetable, not walking, not talking, just let him live”. And how we cried at that time… Laura is still my most vulnerable spot. After everything I fear nothing. The priorities have changed so much that now get trapped with some kind of contract in business on 500 thousand UAH — just an element of life that not even hurt, not unsettling. And Laura — knocks.

It’s horrible when you can’t predict. The child may be better or worse. What happens when you start puberty? Thinking about it, I can’t panic. The budget for the Laura each month — more than 30 thousand UAH, they need to earn. And not to forget about the other two kids so they don’t feel deprived, receive care and love.

Kindergarten we opened, thanks to Laura. It was necessary for her to socialize. This made sense to collect in one place the necessary experts. Initially, the garden was for ordinary children, not inclusive. It, by the way, went to our oldest daughter. Now go to including children with developmental disabilities. We did not allocate them in separate group, just each of them comes with their tutor (mentor. — Trick.)

“A year ago we didn’t think Laura will talk. Now do not exclude that someday she will get the Nobel prize”

I think at this age it is more important not to learn how to count to twenty, and to understand how people interact. Children have just formed openness, there can be underlying phobias, they begin to understand how you can communicate with each other. When they feel comfortable developing other skills. For example, we have a boy, who in 6 years has not parted with the periodic table, and a group of five, which asked the tutor to tell them what is straight and corners.

In September we will open a school, and this is also with an eye to Laura. And then I think to make a vocational school for children with disabilities. They can photograph, plaster, paint, cut, whatever. Why not get a profession and start to earn a living? My friends laugh and say, “at this rate, you University will open”.

I’ve never been passive, but I didn’t know that so much can. Not to say that he would like to relive it all again, but Laura is very lucky. We have become stronger, more humane, more intelligent, savvy, collected. We have learned to work on the floor in intensive care near the only outlet, opened new businesses, began to build the house. If we were at the time, so much thundered against the ground, perhaps all this would not exist.

Ahead could be anything. A year ago we didn’t think Laura will talk. Now do not exclude that someday she will get the Nobel prize.

My son is not a cross

Olesya Yaskevich, mother of 11-year-old Matthew, the founder of the organization “Baciti heart”

I had a difficult birth. Matthew was great, he was dragged out of me by vacuum. Then his brain was damaged. A few days after birth, when he was in the ICU, and I was half-dead, to me the nurse came and gave a signature on a piece of paper. Read: “I, so-and-so, refuse your child due to the fact.” I could not understand: in the sense — no? As it? Then I approached the doctor and said, “You’re so young, and he will not survive. You don’t need it, give birth to another.” Only then did I realize that something is not right, because before that no doctor I said nothing of the sort.

When Matthew was three months, I learned that he does not see. Turned on a bright light in the room, and he did not respond. It was imperceptible, but inside me something moved. The next day we went to the doctor and he was diagnosed, which means that the eyes of Matthew is healthy, but his brain does not “see”.

The optometrist referred us to a neurologist, the neurologist to the ophthalmologist. We wandered to the doctors, then I found alternative treatment, and every month we went to the brain Institute in St. Petersburg for 10 days to stimulation. Later it turned out that because of the brain damage that could not be done, and we ended testimonials to very severe forms of epilepsy. Matthew was then about a year.

In Kiev, the diagnosis of epilepsy is still minus some level, so I don’t know how Matthew did survive. He was treated as a hit anything. It just tried all the drugs: will — will not work.

Once the attacks did not stop for about five hours. Matthew came first in somaticheskii sleep, after — in a coma. It became clear that I’m doing something wrong. In that time I have talked with other moms, and one of them advised me of the Professor from Moscow. We went. At first the doctor said if we had one attack a day is already a victory. Eventually we came out on the attack in a week, then a month. Then I had a remission, and for some time we lived without seizures.

After the Maidan prices for Ukrainians in Moscow, equated to the price for foreigners. This means that they have grown five times. We could no longer afford the trip, but after some time the doctor, whom we consulted in Moscow, opened a clinic near Kiev. Matthew for several years there.

“During pregnancy I planned a son the first five years — when he will go to kindergarten and to school, what clubs I will give it. Then it flew into the garbage”

Now my son is in remission, which lasts almost half a year. Matter development, and ten months ago he finally started calling me mom. It was very unexpected. I taught him the word “Mama,” he repeated. At some point, he said, “Mom!”Then again. At first it was a game, and then I saw that he understands that mom is me. Don’t even know how he is — he’s not saying that. It did not ask: “How was your day?”This is not the case.

I’d really like to know what he thinks in his head, as he builds thought. Some things you know intuitively. How can it be different? We all feel their children and those who are near.

Matthew is very steep, you can’t fool him, and he doesn’t know how to lie. If he is uncomfortable, he will not say: “Mom, I don’t like”, but the behavior will make it clear that it is not good.

He has the features associated with clothes. On the street, he always wears a hat — in winter and summer. One day after winter Matthew couldn’t wear another hat, that was his tragedy. If we are going somewhere, I can’t ask: “Matthew, take off your hat”. If he takes off his hat, fully dressed in pants and home Slippers. So we walk, for example, at the Mall. When we go outside, Matthew must be the hat, behind the backpack, in the hands of the cane. Without these attributes he would not leave the house.

Or this sneaker. This seems a trifle. But our sneaker three and a half years, they should be seen. They’re small, I darn and sew. But the other shoes he puts on in any.

My son has his own philosophy of life. I think he’s only a few years ago began to realize that there are other children. Can’t say that he loves to play with them. If he is comfortable, he will just be with them in the same area. Something to pass on, listen to music, to go about their business. He communicates, in his own way.

First two years were the worst, but I wasn’t tearing my hair out and shouted: “God, why me?” All diagnoses were learned gradually, and every started something active to do. Did not allow himself to relax. Three to four years Matthew I collected all the diagnoses and started social activities. Just because they understood that to help yourself I can only.

If Ukraine was some public organizations like “Baciti heart”, we would not have opened. Another reason which appeared “Baciti heart” — I always wounded that parents of children with disabilities perceive as the poor, unfortunate ride a horse. When I said that is not true, I said, “do you have This form of despair, you need to go to a psychologist”. I realized that I want to create something without the drama. No drama is our motto.

Now we have several existing projects. One of them is summer camp. All the kids go somewhere in the summer and our category is nothing there. They just sit at home. Although our camp is not only for children with disabilities, it is for everyone.

“We live, rejoice and be glad here and now. I stopped to save money on the best or worst day. I want to go somewhere — go. Nothing delayed”

At some point, asked the question: what will happen to Matthew when he’s 16-17 years old? This started our pilot project for adult children. They make a group of candles, home decor, soap. Came to us people over the age of 25, some of them last 20 years sat at home. I understand that this future could threaten my Matthew, so doing things out of selfish ambition. Never say you want to save the world. In the reality I create is to live tomorrow my child.

With the emergence of Matthew, my life became different. Changed circle of friends, we divorced. Some friends and acquaintances cannot understand how I can live and enjoy, to joke: “Matthew, did you not see where I’m going?”When people don’t understand something, they are suspended.

Early in the first place was the wealth — to buy a house, a car. When Matthew was born, it all disappeared. The money went to treatment and I realized that when there is money is good, but it is not important. At some point I thought: I have money, but no one can help me, no one is able to make Matthew was not hurt.

During pregnancy I planned a son the first five years — when he will go to kindergarten and to school, what clubs I will give it. Then it flew into the garbage. When he was in a coma, the doctors said that tomorrow may not come. It is important to remember that we live, rejoice and be glad here and now. I stopped to save money on the best or worst day. I want to go somewhere — go. Nothing is deferred.

For 11 years I have grown a shell. At first I was torn up when someone was talking bad about Matthew. Once rode the subway, and next to the Matthew sat a woman. She thought he pulled off the cap, she began to improve. I said, “No, the baby is fine”, but she continued. In Matthew’s this feature that if it is in the header, you can’t touch her. He got nervous, waved his hand and hit the woman in the jaw. And then I heard: “you’ve Done yourself tattoos (I have tattoos), such born idiots, which are then transformed into separatists.” I stood and smiled. What could I say to her?

Another case in the metro. Sat opposite the girl and looked at us. Then came up and said, “Well why did you have him? You suffer, he suffers. What for?”I was ready to hear anything but that. We got to talking, met. Last year she came there to be a volunteer to our camp, and recently went to the US for the volunteer program. She said that before me, thought that children with disabilities — it’s scary that they are born only in drug addicts.

One day, Matthew had a seizure on a walk. The boy’s mother, with whom they were just sitting in a sandbox, not even played together, grabbed him and began to wipe his hands, splashing antiseptic. It’s all from low knowledge people are not aware that epilepsy is not contagious. Many people feel shy to ask, and who is not shy and asks, “Oh, why do you have it? Why isn’t he talking? Is he a moron?”In principle, Yes, he really is such a diagnosis. What can you do?

“My child cool and awesome! Well, Yes, a little does not see, Yes, a little not understand. But everyone has their own nuances”

I was very upset that I can’t communicate with him with words. When Matthew is hurt, he’s not identificeret where exactly this pain is. Just cry. May be sick head, stomach or leg. This is the worst — I’m not able to help when he is physically ill. Still afraid that it gets lost or stolen. He won’t say anything and at first didn’t even realize that he is not with me but with other people. Third fear: what’s next? Although there is much talk about inclusion, I think in the next few years, it will not affect Matthew. People are not willing to see children with mental disabilities, with epilepsy. If with me something happens, it is waiting for a psychiatric boarding school, then a nursing home. Try not to think about the bad, but this is the reality.

I’m glad Matthew. I saw how others can be the world that you can enjoy some simple things that before the birth of Matthew did not even think to rejoice. The rain has gone — you can run through puddles. It’s happiness!

Now I have no purpose to cure Matthew. In our country it is believed that if you have a child with a disability, so need to sell all the apartments, kidneys and to go to doctors and healers. If you do not, people say: “What a bad kid you are doing, why you not all kidneys in the family sold.”

It hurts me too sad and I can cry. But decided for myself that my son is not a cross. My child cool and awesome! Well, Yes, a little does not see, Yes, a little not understand. But each has its own nuances.

I found my place

Daria Gerasimchuk, a mother of a 9-year-old Pauline, the Director of public organization “Vdcol”

When Pauline was a year old, I went to the pediatrician and ask why my child is not responding to “okay” and “magpie-crow”. This is the basic thing that like everyone around children, Pauline showed no reaction. I went to five pediatricians, all of them clapping near Poloniny ears and said, “Oh, all right, the child turns”. I was young, docile mother and thought: “Well, they’re doctors, they know better”. Two months later, again went to the doctor, then again. Never have, never sent for a hearing screening.

When my daughter was a year and seven months, we played in the room with the balloon. Then she moved, and he burst behind her back. Everyone in the room flinched, and Pauline did not respond. We saw this and I immediately had the idea that the child has no hearing. I grabbed her in his arms and was taken to a private clinic. We passed a bunch of surveys, and the doctor told us: “Your child is deaf and will be until the end of life, nothing can be done”.

I later learned that the diagnosis is wrong. Deaf-mutism is an extremely rare disease where the affected organs of hearing and speech. And Polina’s affected his hearing. I was expecting any diagnosis of sulphuric cork, something else. But not this one. The doctor never said anything about hearing AIDS and implants, and I drove home in wild hysterics. Had no idea what to do and how to live. All night, the morning came up with that will put Polina hearing aid and everything will be fine. Called the doctor, asked if it is possible. He replied: “No. I will repeat once again: she is deaf and dumb until the end of life. Nothing can be done”.

Our dad, who never took a very active part in the life of a child is missing. Remember when we were driving from the hospital in the car, he asked me to stop, said he needed to work. Came only three weeks, and then completely left us.

In those two weeks I was screaming like the house is dead. For me it was tantamount to end of life. Since my childhood I was very active, danced and acted. Could not imagine that my child will never go to the disco. I didn’t know that and totally deaf can be active. Now standing in the room where the dance party for deaf teenagers, and then had no idea that was possible.

“In those two weeks I was screaming like the house is dead. The fact that Polina can’t hear, it was for me tantamount to end of life”

A month later I was taken from work with a heart attack. I was alone and I didn’t have any information. Through the tenth hands met a girl, deaf twins. Her kid was in first grade, talking. She said, “I Want to and your so actively lived and spoke?”Thus began the history of cochlear implantation (prosthesis, to compensate for hearing loss. — Trick.)

We stood in line at the ENT Institute for implantation, and it was 875 mi. We were told that in the year doing 20 implantations. This meant that the child receives an implant in 50 years, and to master it, it should be done until three or four years.

The implant was then worth 18 thousand euros and I started to collect money. Addressed to different funds, but they answered: “the Girl, well, you know, your child doesn’t have cancer, he’s not dying. So do not worry.” Any money collected by friends, but this wasn’t enough, my parents sold the apartment in Kiev. When we made the implantation, she was a year and 10 months.

Polina lives with the implant for seven and a half years. She hears in one ear, and she has a normal orientation in space, she speaks. I don’t want to give her a second implant, because maybe someday will come up with a microchip that can be simply inserted into the ear.

After implantation, there was a new problem — rehabilitation. We could not find a teacher of the deaf. And when found, she told me that Pauline have four classes a week, otherwise she will be boarding, and that those who speak in sign language, is mentally retarded. One class was worth 200 UAH. I worked as a teacher, and not enough money. Had clubbing until late night, moonlighting as a tutor English. In parallel with all this I was collecting money for the implantation and rehabilitation of other children. For three years and gathered eight children.

Five years ago I was invited to become the Director of the public organization that helps people with hearing impairments. I am now in the rehabilitation center in which the children come from all over Ukraine and work with the school, speech therapists and psychologists. In summer we organize an inclusive camp. We also have a youth club sessions in sign language, computer courses, master classes, theater and club for parents of children with hearing impairments.

Polina goes to the third class of an ordinary school. Yes, she has speech problems and she comes up with their words. Sometimes someone of the kids says, “Oh, you’re deaf”. She says, “I’m not deaf, I’m not hearing. Tell me in my ear and I will hear you”. It all depends on the child and his character. Unable to poison anyone. My recently said that she’s dumb, so she put in the eye.

“Do not pull their children to some false standard. You just need to love the child and teach him to love the world”

Polina knows sign language and communicates with different children with cerebral palsy, wheelchair, blind. Daughter is ready what if tomorrow she will sit battery in the implant, she will cease to hear, and calm about this. For example, the pool floats “without an ear” and talking to coach their signs. If you ask her like this — not to hear, she will answer that it’s not terrible, but uncomfortable.

If I do not hear, will not die, but I will be hard. I will become more dependent on their environment, how these people will help me and something advise. I love to sing karaoke, and if they are to beat on my leg the rhythm of the song and put my hand on his chest so I could hear the vibration of the voice, I can sing.

Pauline is happiness. Thanks to this child I found my place in life. It is important for me to show people in Ukraine that the rules don’t exist and you should not pull their children to some false standard. You just need to love the child and teach him to love the world.

Photo: Alexander Chekmenev, from personal archives

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