Why did this happen to me?

After the parents find out the diagnosis of the child, the process of its adoption begins. The first stage is negation. It can’t be this, it’s not autism, it’s just a developmental delay, it’s not mental retardation, not Down syndrome, not cerebral palsy. The neurologist (speech therapist, psychiatrist) was mistaken. You can not make a diagnosis in 5 minutes of admission. We begin to look for reasons why the diagnosis is not true, we earnestly look for arguments for an erroneous diagnosis. This stage can last a long time, or maybe not. Of course, the faster it goes, the better. It is better for both parents and the child, however this is only the first stage, but far from the last.

            The thoughts “Why did this happen to me”, “Why is it that my child is not like everyone else?”, “Why do I have all this?”, “Where did I manage to sin so?”, Etc., of course, come to mind. these thoughts are not constructive, but you will have to go through this too. It is at this moment that it is very easy to give up and slide into self-flagellation. It is very easy to start feeling sorry for your child so much that you unwittingly contribute to limiting his development. Self-pity and pity for the child are very strong feelings, especially in the mentality of a Russian person. Put your life on the altar, devote yourself to a sick son or daughter, put an end to your career, turn your life into self-sacrifice. A thing like secondary gain also appears here. What it is? “My child is disabled, I devote all my time to him, I don’t have personal time,” my mother says, expecting (subconsciously) praise of her dedication or pity and expression of sympathy. Once in a vicious circle of secondary benefits, it is very difficult to get out of there. Indeed, pity does not allow us to move on. Very often, grandparents suffer from this, negating or inhibiting the efforts of parents to make the child independent. It seems to them that all these activities and requirements make the grandson or granddaughter unhappy. I want to protect the little man from difficulties, because he got so much, and how much is yet to come. Therefore, they love him to the point of insanity, and instead of teaching the child to adapt to the world in which he already lives, they begin to change the surrounding reality in a separate apartment. This can lead to the fact that being at home, where miraculous conditions are created, where the child is understood without words, fed with a spoon, carried on the hands of the toilet and in every possible way they protect him, there is simply no motivation to develop his independence, move his convolutions, try to explain his desires.

It often seems that it is simply impossible to teach a special kid something and if you still try, it will be more likely a mockery of the child, which will not lead to anything good. When such thoughts come to me, I remember how Alice used to collect lotto. She was 4 years old, and she simply overlaid any pictures on the cards, she did not correlate that the pictures should coincide, which was exactly the point. I did not understand how to explain to her, showed and showed how to do it correctly, but there was no result. Very slowly, gradually one or the other pictures were in the right places. I did not see any logic in this, she set the rest as randomly. She really liked the process, and we continued to play lotto. It was painful for me, at such moments I very clearly understood that she had problems and not at all small ones, but I can’t cope with it, I can’t. It seemed to me that I was drowning in a swamp and no one could pull me out of there. It would seem that a simple game is a lotto, but how much despair and despondency it gave me. Now Alice collects the lotto almost instantly, as soon as she started to get it, I started buying more complex options, similar pictures, find by shadow, etc. Slowly little by little, she mastered all the options, but once it seemed to me that this was impossible and I could just refuse this game and not “torture” neither myself, nor the child, trying to educate her. A small victory (we went to her for six months) – I learned to play lotto! Only this is not just a lotto, it is a huge victory! This is the ability to correlate the same pictures, shapes, colors, the ability to concentrate, cultivating perseverance, so many necessary and useful skills that might never have appeared if we succumbed to pity.

As soon as the lotto was mastered, she went with puzzles. Previously, she simply tried to stick any detail to another, the orientation in the image was not from the word at all. But I’m talking about jigsaw puzzles from 2, maximum 3 parts. Sometimes I cleaned them and thought that I would not force, well, it was not given to her what to torment, but I was very supported by the specialists with whom she was engaged, we were given homework and we performed them and puzzles were part of these tasks. Alice is now almost 7 and she collects pictures from 160 details. Recently we were presented with a puzzle of 250 pieces, Alice refused to go to bed until we assemble it. Collected. Of course, she still does not collect 250 on her own, but she is actively involved. And what the child can do with the help of an adult is called the zone of proximal development, that is, this is exactly what the child can master in the near future, the learning process is aimed at this zone.

            So, why am I all this, pity – it kills development. You can not give in to this feeling. I will not say that I completely got rid of him. Sometimes the melancholy and the feeling that it’s all in vain, that no matter how I struggled to the norm, we can never hold out. There is a dream in which Alice speaks, and when you wake up, reality hits you on the head and you want to howl out of despair. We are all living people and cannot turn off our emotions. Of course, we can suppress them, but this is also fraught. We can do something contrary to a feeling of pity. You can try to imagine what will happen to my child when I am not in the world. Who will feed him? Who will take care of him? Does anyone pity him like me. Most probably not. And then understanding must come that it is necessary to fight, that it is impossible to give up, and no matter how you do not want to give up, you need to collect your will into a fist and continue to do it. Repeat actions 100-1000 times, learn to see small victories. Indeed, it is from them that great accomplishments are made!

            P.S. In order to see small victories, you can keep a diary. Every evening it is necessary to write down what the child achieved today, what he did today, what he did not do yesterday. Even if this is a tiny change, even if it is an instant look of gas in the eyes, even if it rolled the ball from left to right, and not vice versa, as before. Reread this diary when it’s getting really bad, and you’ll see that there is always progress and you are great, that you are trying and there is a result, which means that it’s not in vain.