It seemed to me that nothing foreshadowed and the words of a neurologist, in whom we were observed for the second year sounded like thunder from a clear sky. Of course, I understood that my daughter was lagging behind in development, she had problems with speech, but otherwise she was quite ordinary. All problems are solved, she will catch up with her peers by school and everything will be fine. “Make a disability,” the doctor told us. I was confused, not terrified, did not faint from grief, I could not imagine that everything was so bad. She immediately specified whether she would give us disability, because everything is not so bad here. “They will give it, they will give it, take it off, and you will need a lot of money, they will not be superfluous.” I went to work (and at that moment I worked and ran to lunch with my mother, who was sitting with Alice, and we also invited a neurologist to her), I was in a very incomprehensible state. I still did not fully realize what exactly I was offered to do.
For me, disability meant putting an end to my child. To agree with this means to admit that there is no chance. Think about what picture pops up in your head when you hear “a child is disabled” or just “disabled”? A man with no arms or legs, a child twisted by an illness, running from the corner of his mouth saliva. The feeling of pity for the person, the awkwardness of not knowing how to behave (in our society a culture of attitude towards people with disabilities has not yet formed), joy and relief from the fact that this did not happen to you. And then, suddenly, you find out what’s wrong with you. I can’t judge whether it’s worse when you are sick yourself or when your child is sick. Yes, even the word “sick” I never applied to my daughter. It hurts when the temperature, poor tests, when something hurts, we didn’t have anything like it. Yes, he doesn’t say, but not everyone eats, he doesn’t think too fast, but nothing critical. Although not a child prodigy, I didn’t want her to speak three languages at the age of 3.5 and multiply three-digit numbers in her mind, but she is not disabled. At work, I talked about the words of a neurologist and from non-doctors I heard the words of regret and sympathy, the doctors advised me to agree and draw up, because removing it is much easier than getting it, because it is given for one year, because money will be needed for lessons. The arguments are good, but I heard it this way: “a disabled child is a stigma”, “it’s embarrassing to get a disability, as if to admit that yours and your child, and therefore you’re flawed,” “getting disability money is like preying on features your child. ” Of course, with such thoughts I did not rush to collect information and engage in design.
At that time, my husband and I worked, the salaries were quite good, there was no acute financial need for this. Alisa was looked after by my parents, and after work we went to the speech therapist-defectologist and to physical therapy classes. There were classes on Saturday too. Alice was praised, we rejoiced at her successes, but there was not much progress. In addition to classes, we continued treatment with a neurologist, drank medicine, and gave injections (by the way, I learned to put injections on my daughter because I did not have time to drag her to the clinic, and I was afraid that after the injections I couldn’t drag her to see a doctor, and therefore put it on her own. It turned out that my hand was light and things went well). Once, we got a consultation with a very famous specialist, Igor Spitsberg. He advised alternative communication (PEX cards). Perhaps, due to the fact that the whole consultation was somewhat unusual, or due to the fact that when he asked my question about whether she would speak, he answered: “How will God give” this advice I took with hostility. Several times later, completely different specialists told me about alternative communication, but I did not immediately come to its adoption either. Why am I talking about this consultation? This was another point that showed that not everything is so good that the problem is bigger than I allow myself to think. Very slowly (I’m faster because I spent more time on my daughter, and my husband is slower because if you didn’t go into the little things, then outwardly Alice was quite normal, albeit not quite ordinary, but all this could be attributed to character traits) we came to realize that obtaining disability is the end of the road, and a means to deal with its further development.
We have already moved to Anapa, where I no longer work and work on my daughter. Now I regret that I went to work when she was two, because if I had been with her all day, I could have accepted the diagnosis faster, and the sooner this happens, the faster the work on habilitation begins and the better the success. On the other hand, if I had not gone to work then, we would not have been able to pay for her classes, we would not have been able to take a mortgage and buy an apartment in Anapa. Here she made very good progress, she changed a lot, became smarter, words appeared, a little, but they are. We are lucky that an amazing center for working with special children has opened here. So, everything turned out as it should and regret is not appropriate. It is a pity that understanding this does not always contribute to acceptance. I try not to burden myself with thoughts about how, and how everything could be if … If this is possible, you will go crazy and will not lead to anything productive. I can’t completely get rid of them either, I am a living person and I have both minutes of despair and minutes of optimism. In order not to keep in myself, I allow myself to cry, to feel sorry for myself and my child in these minutes, and as soon as the tension drops back into battle.
I used to think that the life of a disabled person or a family with a disabled child is constant depression, despondency and sadness. Only constant despondency is already a pathology. We are living people, and we continue to enjoy the good weather, delicious food, we watch the Game of Thrones and love to travel. Yes, our life has changed a lot, but it has not become worse, it has become different.
We registered disability only 3 years after the neurologist advised us to do this for the first time. It was that quest. When the first time they brought us a pension, I felt joy and shame from being happy. Now, when I say that my child is disabled, I do not blush, do not get confused and do not feel embarrassed, because I realized that the diagnosis with the appearance of the pink certificate has not changed, the world has not collapsed and no one pokes a finger at us. Additional finance is very necessary. One lesson on average costs 600-700 rubles., And they need a lot, but still need to take massage courses, exercise therapy, plus medication. I really want to record it for swimming, but it’s still 600 rubles. in one lesson. If it weren’t pressed, we would have come to the conclusion that disability is not meant to put an end to the child, but to get the opportunity to fix something.
And if you only got the doctor’s advice to make a disability – cry, shout, break a couple of plates, give yourself the opportunity to live these feelings and then pragmatically weigh the pros and cons. Believe me, the pros will be more. Because our main goal is to help the child adapt to the conditions in which he finds himself, to help become independent and the funds should be used to the maximum.