In hire leaves a film “Temporary difficulties” – the history of the “healing” of a boy with cerebral palsy, thanks to virtually abused by his father. But what you need to know about the lives of people with this diagnosis before going to the movie, says the head of the Department of rehabilitation of children with cerebral palsy medical center Mercy, neurologist Elena Semenova.
Still from the film “Temporary difficulties”
- Rehabilitation of children with cerebral palsy: why is it a problem and what to do
- “Temporary difficulties”: whether cerebral palsy treated with violence
- Cerebral palsy is, and the hero slices through the yacht with a babe
- “Give the word that the child will go, and I will do what you want with it” – why cerebral palsy “treat” violence
“To get out of bed and take a step for me it was a problem. I am the best consultant in the country. After all the problems I experienced – I hope you understand how I feel about you?” says the protagonist in advertising the film, which opens in wide release on September 13. The audience is offered a story as wonderful, and just as cruel healing from cerebral palsy.
1. Cerebral palsy cannot be cured, but it is possible to learn to live
“The child is 2 years, not walking, not sitting, crawling with difficulty. Cerebral palsy is not a death sentence! Every night I repeat to myself – at any cost my child will be healthy!!!” (here and below quotes from the forums)
The filmmakers apparently wanted to tell a story of overcoming a painful condition in the baby, but, not being experts, selected the diagnosis of “cerebral palsy” and was wrong. This story might have been more plausible in relation to some other diagnosis, but about cerebral palsy is a fantastic story.
Cerebral palsy is a complex neurological disorders, the result of early brain damage in a time when it is being formed. Unfortunately, this damage is irreversible, and there is no cure for cerebral palsy there is no such magical means. People may to some extent compensate for the infringement, to adapt to the problems of life and learn to fulfill them, developing functions, which he survived.
In our society a widespread exaltation of heroism, heroic efforts and desire to believe that any problems can be overcome if you work hard, and achieve success as the famous pilot, maresiev, who after the amputation of a leg was flying on an airplane.
Of course, parents always hope for the healing of the child – it is quite natural to the human psyche, and any of us in their place, too would be looking for various ways to help the child. But, unfortunately, not all diseases can be “overcome”. Children with cerebral palsy do not meet our requirements “to be healthy” as we would like. Eliminate the brain damage is impossible.
2. Many will be able to get an education and start a family, but traces of the disease will remain
“I studied with a guy in the same group, so it is only in moments of strong emotion began to limp. Red diploma. Little did we know that he has cerebral palsy. Recently, I met him. Handsome, clever. Your business. A charming wife, children angels. And he told me once told me that his mother 30 years ago, the idiots and the doctors advised him to leave the baby house. Say, to be all his life an idiot 🙁 And I know 2 cases where a severe form”.
Cerebral palsy is not one disease but a complex of disorders. There are different forms of this disease and the severity of brain damage depends on the degree of violation of all the functions – both motor and vocal, and communicative, and intelligent.
There may be children who attend mainstream school and go down the stairs on their own on the fifth floor, limping slightly on one leg. Someone can’t walk, but on its own is a stroller, and that independent mobility allows the child and go to school, if he can learn, and to visit theatres, exhibitions, museums. But not on their feet and in a wheelchair, that is, adapting their capabilities.
And even if the child has a severe impairment of the motor apparatus, the intelligence can be preserved. Among children with cerebral palsy many people who will be available to independent mobility, they will be able to receive higher education and to create a family, such as my colleague, the wonderful social worker.
Some children really can be with a reduction of intelligence, some children with severe mental retardation. Can be completely bedridden children who are difficult to feed and water. But even with a mild form of cerebral palsy traces of the disease still remain.
3. A child with cerebral palsy may be born in any family
“ In 10 months from one child to twins diagnosed with cerebral palsy. Is there a cure?
– In 10 months!!!! but before that not been seen? or is it a mistake? consult another specialist… good Luck!”
No diagnostic studies have allowed to establish at what point the damage occurred in the brain. The diagnosis of “cerebral palsy” put on the basis of clinical data. Sometimes the diagnosis of the child put in the year when he starts walking: it is unclear, but he gets up on his feet and goes, and you can see what goes wrong. The heavier the form, the sooner it becomes obvious diagnosis.
Factors that can lead to damage of the nervous system of the fetus or infant, more than 400. This premature delivery and low weight of the baby, circulatory disorders of the fetus during intrauterine development, and the various acute infectious diseases of the mother during pregnancy, and chronic diseases such as diabetes, high blood pressure, problems with blood clotting.
Preterm infants often develop bleeding in the brain, which can also be the cause of cerebral palsy. There is a perception that children with cerebral palsy born in asocial families, particularly in people with alcoholism. Toxic damage to the fetus is one of the many damaging factors, but very often there is no history of our mothers.
Most often the exact cause of the disease cannot be established is a multifactorial disease, a combination of different reasons. We know for sure that vaccinations can not cause cerebral palsy, according to some people.
Birth asphyxia is one of the causes of cerebral palsy, but she is a very small percentage of the total. And birth trauma – this does not mean that the midwife did something wrong. This means that in childbirth there were obstacles, starting with the fact that the fruit were large, and the narrow pelvis of the mother, so the child was born to a long and occurred asphyxia.
The proportion of cases that are mistaken for cerebral palsy, in fact, genetic pathology, and modern research suggests that this percentage is quite high. In this case the child can inherit the disease from parents.
But in any situation to blame the parents for the child’s illness, if this is not the kind of deliberately inflicted trauma, I think, is simply unacceptable in the twenty-first century.
You have to understand that a child with cerebral palsy may be born in any family.
4. Under stress and suffering a child will not learn new
“That’s me, very annoying rehabilitation through the pain. Painfully, the child resists and terrible tonesit any violence, not even very painful.”
“Now, looking back, I realize how much time I missed and how many mistakes you’ve done. But now my baby could be so much better… And good results, in my opinion, can be achieved only with persistent daily debilitating rehabilitation.”
In all degrees of severity of cerebral palsy it is necessary to develop in the child that he is available. Ideal methods of rehabilitation and habilitation, which would be effective in all situations does not exist. In drawing up the program of rehabilitation is reasonable to proceed from the specific difficulties of the child and choose appropriate methods.
Unfortunately, there is the idea that the more intense and aggressive effects on the child, the better the effect. But it’s not working.
It is necessary to understand that rehabilitation and habilitation of the child with cerebral palsy is the process of learning his new skills, that is, the establishment of new neural connections in his brain. Under what conditions is this possible? Only when the child feels comfortable, he is calm and he is interested to engage, and it can in this process focus to something new to learn.
And if we artificially Virgem child in a state of stress, something in his brain start to work not those departments that are responsible for the education and we generally cut off the opportunity for him to learn something. Imagine you are at war, sit in a trench around you explode bombs killed comrades – how you will physically feel at this moment? Will you be able to learn something new in a state of severe stress? I highly doubt it.
At this point, is the question of survival and preservation of life. Stress allows to mobilize the resources and lay out what you already have, as in the exam, but it does not help to learn, but rather a hindrance.
I’m not even talking about violence – an issue not even worth discussing, no one should ever force something to teach, including a man with cerebral palsy. And we condemn practices when a child is forced to suffer. We want to teach the child. And to teach the child only in a situation of calm and confidence when he is interested in what you’re doing. Force is a waste of time and effort. Maybe the child like finger paints to paint, not sculpt from clay.
It is clear that when a man has spent six months in a cast, he must then work out the joints, it can be really painful and be patient. But now I’m talking about the situation of the child’s learning new skills.
5. Demanding the impossible from the child, we teach him to ignore the feelings of the
“A full diagnosis I don’t know, but the boy himself is not sitting, head holding, but weak, legs moving slightly, the handle close to the body and fists always clenched, one eye sometimes slipping away. The boy is so cute, tall, climb the last teeth.
His dad feeds, waters, bathes, carries on the hospitals, in General, all by myself, mom abandoned them six months ago, dad just on 25 years, plus grandma, but mostly dad. I was so impressed by this dad, his name is Sergey. So good, not discouraged, joking, the boy loves her very much, and only does what his hugs and kisses”.
It is very important that between parents and child had a close and trusting relationship of the child to feel safe with their parents. If a parent is hard and demanding, puts the child in the relationship “I will love you only when you go with their feet”, then this is the nightmarish situation of stress like “in the trenches, the war, and flying around the shells.”
The main thing that parents can do for their child is to love him and support that he could, with their help, easy to learn new skills and to learn. And then the child will develop the potential that it was originally laid.
I think all parents love their children, but not all easy to accept the fact of their illness, that their child will not be like they dreamed.
This is the fault of society, it often ignores the fact that among us there are people with cerebral palsy, doesn’t want to know about the existence of such children. If every day we saw them on the street, in various institutions, in public transport, the children would have met in school, we knew from childhood that the world is diverse and not everyone is as lucky to have full health since childhood.
There are people with cerebral palsy who have difficulties with movement, maybe a speech, but they are people just like us, and this world of theirs. And then the birth of a child not plunged the family into a state of existential terror. Experiencing severe discomfort in this situation, the parents want all the forces to fix it, to make nothing and the baby would be healthy, like everyone else.
But you cannot force a person to be different. Science has proven that most of our qualities is innate, it is due to our genotype. If the child is calm, slow, shy, we will make it fast, sporty and bold. Forcing a child who can’t do something, do it immediately and well, we teach him only one thing – to ignore yourself, your own feelings.
In the trailer I saw this topic – when the child is forced to be someone he is not, he is used to ignoring their needs and feelings. And not only in himself but also in others. It becomes tough even narcissistic person who is indifferent to the feelings of others. And here it is not even about the diagnosis and about this method of education, very traumatic.
6. The majority of children with cerebral palsy are unable to receive regular rehabilitation due to the state
“From a wealthy family for 10 years, became almost destitute. All grabbing for the next miraculous method of cure.”
“That’s what I need – to at least briefly told how to behave with the child, what to pay attention etc. I honestly don’t know what to do with Matthew, exercise I the instructor will select, and that’s just life… how to feed, how to relax, how to simplify something that is difficult, in General, how to adapt to the child with the best “amenities”. I’m alone, no one helps me with the kids. Would gladly have attended 5 days workshop on sensory-motor integration…”
Dream on as to be arranged in the system of rehabilitation is not necessary – all over the world, it has long been successfully operating. The main principle of the specialists, which may to help the child should close his house to be. And the child must be able to communicate with them regularly rather than 2-3 weeks a year, as mostly happens in our country.
This right is guaranteed to children with disabilities International Convention on the rights of persons with disabilities, which Russia ratified in 2014 and is now required to comply with all its provisions. But unfortunately, rehab centers in walking distance is still very small, and not in all regions there are, respectively, the children have no opportunities to receive regular rehabilitation by the state. Parents sometimes spend a lot of money to their children was done by professionals in private centers.
A big problem that we have in Russia of rehabilitation specialists – physical therapists, occupational therapists, to help the child and his parents not only to develop a new skill, but also to introduce it in their everyday life, otherwise everything will be forgotten and disappear. That is necessary not just to teach the child to perform some movements, for example squats, it is important to be able to use this skill at home is to get out of bed, walk with a Walker to the kitchen to get a yogurt from the top shelf of the refrigerator, sit down on a chair to have Breakfast on their own. And to help to adapt to the needs of the child.
We have only discussed the professional standards in these fields, and training of specialists on the territory of Russia is carried out by the non-governmental organizations, and foundations. Specialists in the required amount at the moment. And we must understand that medical rehabilitation is only part of the necessary rehabilitation. Should be, of course, also social and psychological-pedagogical.
Supportive therapy, physical activity, a person with cerebral palsy need throughout life, as, in General, and any person to maintain muscle strength and joint mobility, and all the skills that he has.
In addition, the child with cerebral palsy needs to help develop social skills and to go to the store, and with the class to the Museum and to the cinema and to the pizza place. And to be able to order in a café – if the child is able to communicate only by means of cards-symbols, it is necessary to develop it so he was able to explain to the waiter that wants to like this tea.
Unfortunately, children with severe cerebral palsy all my life will need constant care. It is a great burden on their family, and it is important to give parents faith in their own strength and ability to solve problems in stages, and the necessary assistance. Help need a lot.
At the moment our government, alas, nothing to offer – either this grown man is in the family and relatives take care of it, or he’s in a psychoneurological boarding school, where it served the basic necessities of life, such as changing diapers and feeding.
We have not developed the system followed by the living, when people with disabilities could live in separate apartments with the help of the staff. Such projects begin to develop in some cities, but it mainly concerns people with mental disabilities.
Our Marfo-Mariinsky medical centre “Charity” work for the ninth year, and many children with whom we did when it started, has grown up, in school, sing in the choir, engaged in various circles, sports sections and most of us don’t go – rehabilitation in our center we no longer need them, regardless of what the diagnosis was left on their bodies. And it’s very nice to know.
The center of rehabilitation of children with cerebral palsy “Charity” is a joint project of the Martha and Mary convent and the Orthodox service of assistance “Mercy”. The center annually treats more than 300 children from 1,5 to 18 years with cerebral palsy and other diagnoses associated with movement disorders.
Fund “Orthodoxy and the world” opened the collection to the annual wage the physiologist Pediatric palliative mobile service “Mercy”.
Go to the page collection at the Foundation’s website