To parents of the special child: how to keep a family

To parents of the special child: how to keep a family

There has come the 2014th year. I remember, how in the 80th for the first time read «Martian chronicles» Ray Bradbury, and the 1999th year mentioned there seemed to me to the long-term futures. And in the 1995th I gave birth to the son. Now it is the adult 18-year-old young man who is still dependent in a life. He writes about it so: «I know much, but I am able» a little. My son has a heavy form of autism plus a consequence of children’s cerebral paralysis. It if without details.

When my son was born, I was 21 years old. About autism I knew only from the film "Rain man", and behaviour of my son not similar to behaviour of the protagonist of the film. The cerebral spastic infantile paralysis abbreviation to me, as well as my so young spouse, then in general was unknown. Now, 18 years later I would like to share some thoughts with at whom sick children were born quite recently. And that I will tell, grows out of judgment of negative experience: we with mother of my child could not keep our family. And though after a while after divorce we have restored more or less kind relations, and anyway to care of our general child anybody from us did not stop never, the wound remained a wound. Therefore now, understanding it, also I want to tell to the people who have faced similar problems: work over preservation of your family not less, than over rehabilitation of your child.

There are no courses for potential parents of the disabled person. And if such courses existed, it would be on the verge of absurdity. And, nevertheless, it is necessary to understand: the disabled person can be born at any parents. The same at whom such child already was born, not the superfluous will remember: you are not lonely, you two. Your trouble should rally you, instead of separate. And rallying, sometimes it is necessary to work. Do not neglect it, do not lose sight of each other. The special child demands special care, this care can take away from you much more time and forces, than care of the healthy child. But your family all the same should not become detotsentrichny. Wishing to learn about harm of a detotsentrichnost in families I send to Dmitry Sokolov-Mitricha remarkable article in more detail. I will tell simply: do not create a cult neither from your child, nor from your care of it. Simply do for it what it needs.

Your child such what is – rather both of you can accept this fact and not be exchanged for experiences and dreams, about that, «that would be, if …», rather you can normally do that work which will be now business of your life. The quiet atmosphere is good for any child, for the patient it is especially important. The less than daily rough emotions, the better.

Try to order the life as much as possible. If you were inclined to plant a brothel earlier, will keep order to you first with some difficulty. Business of that costs. Life also is so full of surprises, and these surprises are not always pleasant. But something nevertheless is in your power. Forces – both sincere, and physical – will be especially necessary now to you daily for many years. So try to count forces and not to spend them in vain.

Do not show the overestimated requirements. Still before deciding on family creation, you looked narrowly to each other. And everyone could make ideas of other. If after that you after all have got married, bear for it responsibility. Your possibilities are not boundless. For example, it is quite probable, what even working much, you cannot pay expensive treatment of the child. If you the fact that will manage to become businessmen suddenly so here is teachers, engineers or artists, at all. And it is quite probable that you should ask someone’s sponsor’s help. Let it does not become a reason for hostility between you. You are necessary each other and to your child.

Again I come back to a detotsentrichnost problem. Normal human community – in what nobody feels small. Sacrifice – an indispensable component of love, and you should endow now much bigger, rather than to ordinary people. But after all do not turn into functions, remain people. Each of you can have interests, hobbies – give the chance each other though to some extent them to realise. Each of you should have the personal space and the personal time – it is possible, it is a question of one box in a case and one day in a month. But respect time and space of each other. When someone from you refuses something the, let does not reproach another if it does not follow its example. Do not conduct calculation who how many has offered. The world in your family – the most valuable from this that really is in your maintaining. Also remember that each of you is valuable not only as the assistant to the disabled child, but also in itself. Therefore, caring about health of each other, try not to speak: «Put on a scarf, and that you will catch a cold and you can not do that and that». Speak simply: «Put on a scarf, and that you will catch a cold».

It is quite probable that many of with whom you communicated earlier, will keep now from you at distance. Probably, from them you considered someone as friends, and then change in them to you the relation will be especially painful … Try and not to indulge here in excessive grief – you have simply left one more illusion for, actually, these people, of course, were not to you friends. And now everything has risen on the places. The main thing, do not become isolated on the trouble, let your family will be open for communication with different people. Believe, in the world there are a lot of those who is not confused by circumstances of your life.

About openness. How your life with the special child was difficult, time for leisure after all will be in it. Try to be interested together in something else except problems of disabled people. Discuss the read books even if you have not enough time for reading. Watch together movies. Be not tired to learn something new. As soon as you cease to aspire to such knowledge, you start to grow old. If you grow old ahead of time, it will be bad also to you, and your child.

Alas, our official medical structures are still not too competent of questions of rehabilitation of many disabled people. But these structures are competent of replication of the Soviet prejudices and consequently for several years you risk to hear from doctors councils to refuse your child. These councils can be very persevering – you deal with system which to these in many respects exists at the expense of the state subsidising of orphans and refuseniks. If on you will press – will help out the Internet by means of which you can contact a set of the public organisations, ready to render to you legal, moral and rehabilitation support. 18 years ago them was much less, and available to everyone Internet was not absolutely.

You have a special child. And your life now the special. But in this life you should work and at remaining together. And in it your family differs nothing from all other.

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