Do We Need Sick Children?

Right now we stand before this fact: disabled children in our country practically live on “reservations”. First of all, if they live in a boarding school for the disabled, they have absolutely no contact with their peers. But even if they live in families very few of those children can break the vicious circle of isolation and loneliness. And even if the families are active, find groups, etc., their circle of friends still doesn’t reach outside of the disabled.
Anastasia Donets | 03 May 2007

Report on the issue of adequate socialization and adaptation of disabled children. (annual “Christmas readings”, 2007)

The last readings brought about a consensus at to what the primary, most pressing problems for disabled children are. One of the biggest issues is socialization of disabled children and their parents with the outside world, including in the church circles. Many difficulties they face are connected to the fact that most people just don’t see them anywhere and don’t realize what their problems are and what kind of help they need.

So why are they “ invisible ”?

Right now we stand before this fact: disabled children in our country practically live on “reservations”. First of all, if they live in a boarding school for the disabled, they have absolutely no contact with their peers. But even if they live in families very few of those children can break the vicious circle of isolation and loneliness. And even if the families are active, find groups, etc., their circle of friends still doesn’t reach outside of the disabled.

The child’s illness means not just the child’s suffering. Next to him his relatives are battling, loving, suffering…Sometimes it seems as if there is nowhere to go and nothing more that can be done. Those who have experienced this know how it feels: you just want to turn to the wall and sit still, not moving, not doing anything at all. This situation sucks people in and further shortens the social circle.

A well-known art therapist, Kit Loring, expressed this state through the following free verses:

I can’t stand love,
I can’t live without love,
I don’t want to see anyone,
I want to be with people,
Leave me alone,
Please, find me!
I can ’ t be without you !

When new people come to us, many times we don’t know who to help first: the worn out, broken up and nervous mom or the child.

So the first thing on the agenda is psychological support and encouragement for families with disabled kids.

This support needs to begin as early as possible. Actually, if feasible, it should start before the child is born or at birth – if the diagnosis can be confirmed. Otherwise, the increasingly large number of orphans, whose mothers buckle under the pressure of doctors advising them to leave the child, will just continue to increase.

But later as well, when the mother tries to do things on her own, she is often confronted by a negative attitude towards herself and the child. This isn’t even exclusive to mothers with children who have neurological or psychiatric problems. We have a woman in our church with a child who has diabetes. She has been pestered many times by others who say she should give up the child.  

It isn’t a far cry to say that in our country right now families with disabled kids are battling to survive. To call a life dependent on tiny disabled pensions (when parents have to spend so much time and money for treatment and rehab programs) is nothing short of ridiculous.  

And even if the family decides to battle for the child, it is left to do so on its own. Most often, it is impossible to find out about simple things like special programs or subsidies for disabled children and their families – even their rights – not to mention rehab centers.

And those centers that actually exist don’t receive any real money from the government and are left to exist on the sole enthusiasm of the employees. Because of all the expenses (including rent) which are not covered, they cannot provide their services for free. Thus, if we take a broken family (and this is not rare – in 30% of families with disabled children, the father leaves) where the child’s disability is such that the mother has to stay with him at all times and cannot look for sponsors, not to mention work, the child is ultimately left without any sort of rehab.

But in other cases, too, the parents are often like beggars. Not everyone has enough inner strength and spiritual power to continue trying when confronted with boorishness and a complete lack of understanding on the part of officials and doctors.   Но и в остальных случаях родители оказываются в унизительной роли просителей. What can a mother with an autistic or down’s syndrome child reply to the phrase: “Well, if you needed heart surgery or a transplant we might give you money. But you have a disabled child and he will never be normal so who needs you?”  

If only those who could help financially said these phrases. But no, more often the idea of “he will never be normal” is heard from officials who procure vacations for these families and directors of rehab centers. It’s said by the people who are supposedly there to help.

So who needs our children?

Who needs disabled children from the children’s home?

Unfortunately, even Orthodox believers need to be reminded – WE need them. We need all of them, no matter the severity of the disability. The Savior directed these words at us: “I was sick you visited me”. Testifying to the special light and happiness that these children bring are the people who brought a disabled into their home.

Often, these children are blessed by the incredible gift of love, patience, and prayer. The soul develops by its own laws and only God knows the kind of prayer that lives in a child who hasn’t said a word in his life because of his disability. Father Paisi’y of the Holy Mount Athos once said that patience in suffering and trials is also a prayer. Probably only mothers know how much suffering their children go through at times…

Father Aleksei Grachev, who was one of the first to visit orphanages for disabled children, said that perhaps the world is still in existence because of the love and suffering of these kids.   .

Here are some excerpts from a 12-year old autistic girl’s diary:

«Question: Do I need math (not arithmetic, but math as a science), geography, biology, etc.? One of the teachers in my school asked this question. He thinks that people like me need to learn to go to the store, cook food, ride public transportation, and say Happy Birthday to relatives. Everything else is unnecessary .

Yes, those things are important, because they are part of independence, but without the other things life is boring. And you need to work, so how do you do that without knowledge? A person cannot live a real life if he doesn’t discover the world and himself in this world.

I talked to Inna (psychologist from “Sunny World” rehab center to whom Sonya speaks with the help of a computer) about the impression people, including teachers and doctors, have of disabled people. I don’t completely agree with them that the reason for misunderstanding of the disabled lies in fear and the futility of attempts to understand. I think it is also in numbness and deafness of the heart, in a lack of desire to understand. It’s just too much work and they are lazy. A person who is afraid has to be sensitive, on the other hand.  

I thought about Max . How can people treat the disabled in this way? He’s only 14 years old and no one needs him and all because he has cerebral palsy!

And how do they not understand that because of people like him, the world still turns and other people live. Healthy people cannot hold the world together in this way.”

When one spends some time with “alternatively gifted” children, it often becomes apparent that they know more about life than us – grown up and healthy. If this kind of child is given a healthy environment and some support, then he not only starts to draw, write poems and incredible stories, but also begins growing spiritually and opens up for himself and for us God’s world… from a completely different perspective.

Starets Paisiy of the Mount Athos answered the question of whether a disabled child can have meekness and love in him by saying: “Why not? Do you think many healthy people have his kindness? Imagine with what love he prays and bows to God! I would love to be in his place! And so what that I wouldn’t be able to speak or I couldn’t understand things! God gave me many gifts, but I wasted all of them. In the other world even theologists and many saintly people will be second to these children! Perhaps God Gives these children something special, because in their worldly life they could not live a life like everyone else.”   

Of course, in order to understand and love a child with special development issues, some spiritual work on oneself is necessary, even on the part of relatives. Yes, even mothers sometimes need to learn to love a special child.

Right now there are classes for parents of disabled children where teachers who have experience in the field are ready to help. These kinds of courses can also be started at church parishes. Sometimes it is enough to just talk, calm down, and find out about different services. Sometimes a mother who is about to blow up just needs an hour away from the house, a change of pace for a little bit. Amazingly, parents with disabled children say that helping others helps them find consolation and help.

It’s quite important to understand how much these people need our help and consolation, our love. I feel very bitter saying that often the carelessness and sometimes aggression that our parents encounter even in church leads them away from church. So we have to be very careful in suggesting to them to confess and receive Communion and finding a church where no one will be unkind to them.

Unfortunately not even many priests know about the needs of these families. It would be good if the news, including Orthodox news services, would give such families the ability to tell their stories. We have such magazines, “ Neskuchniy Garden ”, “Thomas”, which not only with love and true knowledge tell about the disabled and their life, but also give some necessary information. The other wonderful fact is that these magazines also write about many other things. It would be great if we had more of these types of publications.

Even very gifted children (and there are lots of them amongst disabled children) are still just kids. They also need to be with kids their age, to play and do all the things others do. Experience shows that the benefit of this time together is two-fold: not only on the part of disabled kids, but also for the healthy ones. Especially helpful are joint activities such as camping, pilgrimages, holidays, etc.

In our rehab center “Our Sunny World” we have had horseback riding camps for many years where both disabled and healthy children live and ride together. In a few days, they all mix up and adults can’t really tell whether they are looking at a disabled or a healthy child. A child who has a disability is just provided with necessary help and tools, but his disability isn’t made into a kind of fetish.

This is the model of a normal, healthy society with a normal view towards the disabled.

A few words can also be said about our canine therapy group “Sunny Dog”. Classes are held at normal Moscow schools. In between classes, healthy students can take a peek at what is going on, play with the dogs. Many kids really enjoy this . Our children, in turn, go to Sunday school, extra-curricular activities, etc. No one forces communication, but it happens very naturally, on its own.  

However, this is a rare example of positive experience in the field.

Those who are worried about the problems of disabled children need to unite and find out more about each other, about each others’ ideas and work. Only in this way, together, we can begin to break through the ice of misunderstanding and help these children find their place in the world.

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