What does it mean to be the mother of a child with autism: personal experience

Some consider autism a trait of geniuses, while others try to stay away from people with autism spectrum disorder (ASD). But both of them know little about how the parents of such children feel. We talked about this with the mother of a girl diagnosed with ASD. Here's her story.

Seeing that your child does not fit into any company

Sometimes it's funny, but more often it's very painful. My daughter was diagnosed only in first grade. But even before that, I saw that she was not at all like other children.

At the children's development center, where we went to various classes, there were small windows near the doors to the classrooms. It’s very convenient: you can look in and see what’s going on inside and how the children behave. My child was very different from the others. They were having fun, chatting with each other, and running races during breaks. We weren’t bored in class either—we talked with the teacher and answered questions.

My daughter was silent. She never participated in general games, and she didn’t want to talk to anyone. At all. But she easily collected puzzles and all the construction kit options that were there.

One day we came to the center for a New Year's holiday. The children watched a puppet show, and then, together with Santa Claus, went to the next room to have fun at the Christmas tree. My child looked at everyone, and then went backstage. There my daughter found theater dolls, put them on her hands and began to play her fairy tale. She never made it to the tree.

It's great when a child finds what interests him on his own. But then you notice again and again that all the guys are together, they are having fun, but your daughter is not.

She doesn't smile, stays away, and sometimes covers her ears. Other children communicate, they feel good - a wonderful picture. But your child is like a puzzle piece from a completely different set. And it doesn’t fit into the overall picture. When this is repeated day after day, it becomes painful. Maybe because you know: there is no way you can fix it.

Be prepared that at any moment everything can go wrong

Are you calmly getting ready, for example, to passport table or to the post office - where there are a lot of people. Of course, the child is with you, because there is no one to leave him with at home. And everything is going well. But then, for some unknown reason, the daughter begins to cry. And there is no way to calm her down. No matter what you do, she starts screaming only louder, and there is real fear in her eyes.

I later learned that people with autism spectrum disorders often have increased sensitivity to certain stimuli. Some people cannot stand bright light or cannot tolerate the touch of rough fabric to their skin. And sometimes it’s very difficult for my daughter to be in places where it’s noisy. Especially if there are babies nearby - she cannot stand children’s crying at all.

As doctors told me, this may be a reaction to a certain frequency of sound. But at first I didn't know this. And when I saw that my child was just screaming at first, and then starting to shake as if in horror, I almost cried myself.

Intuitively I found a way out: I needed to hug my daughter very tightly and hold her close. And immediately leave from where there are a lot of people.

Sometimes such situations dramatically disrupted all schedules. And we, for example, suddenly came out of bus three stops earlier. Or they called me from school: “The girl is hysterical, take her home. She won’t be able to study today.” It was very difficult to plan anything under such circumstances.

Do what you think is necessary and don’t explain anything to anyone

They say you need to tell other people about autism. Explain that what is happening to the child is normal and he is not a threat to anyone. Maybe we should. But usually I had a choice: either I help the child, or I tell others what’s going on. It is impossible to do both at the same time.

Therefore, I always chose to pay attention to my daughter. For example, one day we came to the post office. We waited in a short line, and I already signed the paper to receive the parcel. But then the girl began to panic. I could only squeeze her hand tightly and say: “Wait, just a little bit left. We'll leave now. Everything will be fine". And she repeated this until we went outside.

Explain to people in line why I can’t calm the child down, and I also don’t scold the girl for being so ill-mannered behaves, I couldn’t. Therefore, she also behaved rudely. That is, she simply did not pay attention to anyone.

Sometimes doubt the conclusions of experts

We are very lucky with the school. My daughter was sent to a correctional educational institution, and at first I was not sure that she would do well there. But everything turned out great. The girl ended up in the class of a wonderful teacher. She held my daughter’s hand when the class went down to the cafeteria and the girl was very uncomfortable because of the noise. I also repeated sentences from the dictation several times especially for my child.

And she reassured me: “Yes, it’s very difficult for her to communicate. But she’s smart, she does many exercises faster than the rest of the class.”

But there were others too. For example, speech therapists who said: “The child is in first grade and cannot yet pronounce the letter R? Well, we will try to help, but we don’t guarantee anything.” And they are three years later: “The fourth grade ends, and she still doesn’t pronounce R. But if they couldn’t fix it before the age of 10, then it won’t work.”

They are, of course, specialists. No joke, they are truly professionals who have helped many guys. But I didn’t want to agree with them. My daughter and I regularly did articulation and breathing exercises. Repeated Tongue Twisters, taught poetry. A year later, the girl began to speak much more clearly. And two years later, already in the sixth grade, I managed to cope with R. And since then she has not had any problems with speech.

So, of course, you need to listen to experts. But they could be wrong. In any case, it is worth doing everything that can help. We might not have succeeded. But I thought: if we don’t try, it won’t work out for sure. We don't lose anything. And it turned out to be the right decision.

Facing a major personal crisis

Gradually, things began to improve for my daughter. She studied well. She also successfully recited poems at competitions - it’s not for nothing that we studied. Of course, I rejoiced at the girl’s success and was even proud of her. But the question constantly rang in my head: “She’s great, but who are you?”

You see, I did not want to consider myself only the mother of a child with autism. I wanted some kind of professional fulfillment, my own achievements. At first I worked actively for freelancing, but then began to fulfill orders for only 1–2 clients. There was simply no strength left for more.

And then a crisis hit me. I barely communicated with anyone except my family. Simply because I didn’t want to answer the question: “How are you?”

I wasn’t ready to complain, but I couldn’t say anything positive. This period did not even last a year - longer.

I read a lot of all kinds of psychological books. And in one of them I saw a very simple life hack. Here it is: if you want to get out of the hole in life, but you don’t have the strength, start with one little thing. From something you haven’t done before, but now you promise to do every day. The main thing is not to miss a day. Over time, this tiny change will pull the rest along with it.

I started going out onto the balcony every morning and doing charging. In winter it was especially fun - in the cold I wore a jacket and two pairs of woolen socks. Sometimes I would break down and quit the exercises, but then I would still resume my classes.

It seems like a small thing, but it really helped me. When you do something regularly for a year, you begin to look at yourself with respect. And then plans for the future appear.

Appreciate your child and learn from him

My husband and I did not tell our daughter about autism. There was just no talk about it. But one day, when the girl was ten years old, the news was shown on TV between cartoons. They talked about how performances were being staged in Moscow specifically for children with autism. At these performances there is no loud music or too bright lights, and at the end the children are asked not to applaud, but simply to raise their hands in the air and wave so as not to make noise.

The broadcast was timed to coincide with April 2, Autism Awareness Day. The daughter said that she herself would love to watch such a performance - it’s a pity they don’t show this kind of thing here. And asked what autism is. I explained to her that this is a condition where it is difficult to communicate with others. When a person does not want to try anything new, but chooses what is familiar and familiar to him. When loud music or bright light may interfere.

“Everything is just like mine,” said my daughter. - So I'm autistic? And the second of April is autism day, right?” I confirmed. “Then it’s my holiday,” she said. - Will there be cake?

I really want to learn how to react to various troubles in the same way. Is it true. And I remember this conversation, when it seems that everything is bad, and I just want to lie and suffer. So thank you to your daughter - there is a lot to learn from her.