Rollbacks in the development of a disabled child-how not to give up and not go crazy.

This is a very difficult and very personal article for me. My thoughts and my feelings may not coincide with yours and do not claim to be the ultimate truth. My daughter has several diagnoses (autism, SMA, mild mental retardation and ADHD), I wrote about this in detail here and here.

There are situations when you do not just give up, but it seems that you are at an impasse, that there is simply nowhere else to go and even if there was somewhere, then there are no forces for it. It seems that everything has already been adjusted, passed all stages of making diagnoses, developed a strategy, got used to new conditions. Life rolls on nakatannoy, every day you celebrate some small, but such important successes, have learned to enjoy the little things. Recently, Alice swayed milk tooth (not the first), so she came to us and asked for help. In the bathroom, she purposefully looked in the mirror at this tooth and tried to loosen it to pull out, then asked me to do it. As a result, in 10 minutes we successfully pulled out a tooth. And she even considered it carefully, examined the hole that was left in the place of the tooth. By the way, this is the 7th milk tooth, which she falls out, but before that she seemed to care, and then such interest! In General, any of her interest in the world always pleases us. I looked at the cat walking down the street-happiness! With a surprise considering the small child in the pushchair – hurrah! During an evening walk by the sea lies on his back and looks at the stars-great! Maybe for someone such trifles are quite normal and even ordinary, but for us it is every time a great joy!

And now, it seems that we are ready for everything, that nothing can shake our calm, that we are ready to solve any problem, but then something happens that again knocks the ground out from under our feet. Most often such events are rollbacks in development. The reasons for rollbacks can be very different. One day, we passed a rehabilitation course from Chinese experts, it includes acupuncture, logmessage, massage and physical therapy. After this course, Alice improved her understanding of speech, if before she did not understand even very simple requests from one word, then after the course she began to understand simple sentences from three words. This is a great success for us! Only here in behavior after this course there was a huge rollback. Constant tantrums, she did not want to leave the house, it became impossible to negotiate with her, she refused to go to her favorite speech therapist and neuropsychologist. Any refusal was perceived with hostility. It lasted about 3 weeks. We were very lucky then that with the next course came from Krasnodar wonderful neuropsychologist, Montessori teacher and just a wonderful woman and a real storehouse of peace. We passed at it at once 2 courses on 10 days with a week break. Re-learned to go to class, to find peace and balance. During this time, I think I lost a few pounds from constant stress. Imagine your child as a powder keg – can explode at any minute, and you live as if walking on a minefield-one wrong step and an explosion. But have passed it, have returned to the mode, have calmed down again, have exhaled and have continued to go forward.

About a year, probably, Alice slept well at night (and many children with similar diagnoses have problems with sleep, I once wrote about it here). And then, suddenly, for no apparent reason, the sleep was disturbed again, which means that she could again get up at 2-3 am and stay awake until the morning, and since she does not sleep during the day, then by the evening the nervous system is already at the limit, again whims, tantrums and stress from her mother. It happened that after such an early rise she fell asleep in kindergarten (we go to a group of “Special child”, for short stay – 3 hours) and slept the evening could not sleep, walking until 4 – 5am. Of course, such situations arose not every day, but 2, and even 3 times a week, which means that the regime of the day collapsed, the nerves are again at the limit. The reason we have not found, decided that it was a spring aggravation.

There was a time when she had a very important ritual, if we left the house and went to play on the Playground in the yard, then she then had to get to the nearest shopping center, there on the second floor to play in the children’s room. Gradually this was transformed in the, that she went out and on Playground commanded already not for moreover, to there play, and as ritual action before the main event – visit s gaming room. After some time, any exit from the house had to be made on this route. We struggled with this for a long time. Very slowly, very gradually, we accustomed her to the fact that, leaving the house we can have different routes, that we can walk or drive. We managed it, already, probably, about 2 years as I already forgot about this ritual, when suddenly, the other day, she pulls me after kindergarten to the Playground in the yard. I’m ashamed to say I felt happy, I think she wants to play with a girl who rode a roller coaster, but no. Alice clearly followed the same ritual, took me to the Mall. Well, I more or less quickly it came and I’m constantly distracting turned back to the house. Truth, quite without hysterics not go off, recent 200 meters we has been going very slowly, she periodically has fallen on land and crying, I its tickled, we rose and again has been going in side homes. When remained already meters 20 tickling and other methods distraction act stopped, had to drag its on the hands of. In the Elevator she had gone, the house notably posterula, but calmed down. Why didn’t I take her to the Mall? We had no plans for this, we did not agree on it, did not discuss it and if I gave it up, I would strengthen again this seemingly forgotten ritual and would have to start all over again. This case, too, strongly knocked me out of the rut, because I already relaxed, such tantrums on the street she already not was very long and this not most derive event, which can happen.

In such moments, that I described higher is beginning to seem, that all efforts, which we applied years went ashes. They begin to think that everything is useless, that there is no end to the path. It’s like the situation in Lewis Carroll’s Alice through the looking glass, where we go-go-go, and it turns out we’re standing still. Forces flow away like sand through your fingers, you want to lie down, hide under the blanket, withdraw, let everything be as it will be, you want someone to come and help, solve your problem, but no one comes and does not solve. This is a very difficult emotional state and, of course, very unproductive, and maybe someone knows how to cope with it, but I do not always succeed. Any rollback is always a disappointment in your abilities, skills, yourself. It is very difficult after such situations to get up again, collect yourself in a bunch and start over. But, as recently in one of the comments I wrote the mother of a special child “we must move and go forward because the life of our children depends only on us.” So, after giving yourself time to lie on the bottom and feel sorry for yourself, you have to get up again and continue the journey. Gradually, a positive attitude returns, optimism and hopes for the best appear again, faith in their own strength and confidence that everything will turn out.

Therefore, I really want to support those who despair in their abilities, who are now difficult – everything will definitely work out! I believe in you! I want to share with you my confidence in your abilities! And remember that in many ways the success of our children depends on how in the resource are the parents, do not forget about yourself, love yourself and, at least sometimes, please!