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Parents of special children need not only the support and understanding of others, but also the opportunity to find their own meaning in life. We can’t take care of others if we don’t take care of ourselves. Maria Dubova, mother of a son with an autism spectrum disorder, talks about an unexpected source of resources.
At the age of one and seven months, my son Yakov began shaking his head and covering his ears with his hands, as if they were bursting with pain. He began to run in circles and make involuntary movements with his hands, walk on his toes, crash into walls.
He almost lost his conscious speech. He constantly mumbled something, stopped pointing at objects. And he started biting a lot. At the same time, he bit not only those around him, but also himself.
Not that before that my son was the calmest child in the world. No. He was always very active, but there were no such obvious signs that something was wrong with him until a year and a half. At a year and eight, on a doctor’s check, he did not sit still for a second, could not assemble some kind of tower of cubes that a child of his age should build, and bit the nurse badly.
I thought it was all some kind of mistake. Well, sometimes the diagnosis is wrong.
We were given a referral to a child development center. I resisted for a long time. Until the pediatric neurologist spoke out loud the final diagnosis. My child has autism. And this is a given.
Has something changed in the world since then? No. People continued to live their lives, no one paid attention to us — neither to my tear-stained face, nor to my confused dad, nor to my son rushing somewhere, as usual. The walls did not collapse, the houses stood still.
I thought it was all some kind of mistake. Well, sometimes the diagnosis is wrong. What are wrong. “They will still be ashamed that they diagnosed my child with autism,” I thought. From that moment began my long journey of acceptance.
Looking for a way out
Like any parent whose child is diagnosed with autism, I went through all five stages of acceptance of the inevitable: denial, anger, bargaining, depression, and finally acceptance. But it was in depression that I got stuck for a long time.
At some point, I stopped trying to re-educate the child, rushing to the addresses of the «luminaries» and additional classes, stopped expecting from my son what he could not give … And even after that I did not get out of the abyss.
I realized that my child would be different all his life, most likely he would not become independent and would not be able to lead a full life from my point of view. And these thoughts only made matters worse. Yashka took all my mental and physical strength. I saw no point in living. What for? You won’t change anything anyway.
I realized that I was depressed when I caught myself doing a search query: «modern methods of suicide.» I was wondering how they settle scores with life in our time …
Has anything changed in this area with the development of high technologies or not? Maybe there is some kind of application for the phone that selects the best way to commit suicide depending on the character, habits, family? Interesting, right? That was also interesting to me. And it’s like it wasn’t me. She didn’t seem to be asking about herself. I just found myself reading about suicide.
When I told my psychologist friend Rita Gabay about this, she asked: “Well, what did you choose, which method suits you?” And those words brought me back to earth. It became clear that everything I read related to me in one way or another. And it’s time to ask for help.
He will be different for the rest of his life.
Perhaps the first step to “waking up” was for me to admit that I want it. I clearly remember my thought: “I can’t do this anymore.” I feel bad in my body, bad in my life, bad in my family. I realized that something needs to change. But what?
The realization that what is happening to me is called emotional burnout did not come immediately. I think I first heard about this term from my family doctor. I came to him for drops in the nose from sinusitis, and left with antidepressants. The doctor just asked how I was doing. And in response, I burst into tears and for another half hour I could not calm down, telling him how they were …
It was necessary to find a permanent resource, the effect of which can be constantly fed. I found such a resource in creativity
Help came from two directions at once. Firstly, I started taking antidepressants as prescribed by the doctor, and secondly, I signed up with a psychologist. In the end, both worked for me. But not at once. Time must have passed. It heals. It’s trite, but true.
The more time passes, the easier it is to understand the diagnosis. You stop being afraid of the word «autism», you stop crying every time you tell someone that your child has this diagnosis. Just because, well, how much you can cry for the same reason! The body tends to heal itself.
Moms hear this with or without reason: “You must definitely find time for yourself.” Or even better: «Children need a happy mother.» I hate it when they say that. Because these are common words. And the simplest “time for yourself” helps for a very short time if a person is depressed. In any case, that’s how it was with me.
TV series or movies are good distractions, but they don’t take you out of depression. Going to the hairdresser is a great experience. Then the forces appear for a couple of hours. But what’s next? Back to the hairdresser?
I realized that I need to find a permanent resource, the effect of which can be constantly fed. I found such a resource in creativity. At first I drew and made crafts, not yet realizing that this was my resource. Then she began to write.
Now for me there is no better therapy than writing a story or laying out on a piece of paper all the events of the day, or even publishing a post on Facebook (an extremist organization banned in Russia) about what worries me or just about some other Yashkina oddities. In words I put my fears, doubts, insecurities, as well as love and trust.
Creativity is what fills the void inside, which arises from unfulfilled dreams and expectations. The book «Mom, AU. How a child with autism taught us to be happy” became the best therapy for me, therapy with creativity.
«Find your own ways to be happy»
Rita Gabay, clinical psychologist
When a child with autism is born in a family, the parents at first do not realize that he is special. Mom asks on the forums: “Does your child also sleep poorly at night?” And he gets the answer: “Yes, this is normal, babies are often awake at night.” “Is your baby picky about food too?” “Yes, my kids are picky too.” “Does yours also not make eye contact and tense up when you take it in your arms?” “Oops, no, it’s only you, and this is a bad sign, urgently go for a check.”
Alarm bells become a dividing line, beyond which the loneliness of parents of special children begins. Because they can’t just merge into the general flow of other parents and do like everyone else. Parents of special children constantly need to make decisions — what methods of correction to apply, whom to trust and what to refuse. The mass of information on the Internet often does not help, but only confuses.
The ability to think independently and think critically is not always available to anxious and frustrated moms and dads of children with developmental difficulties. Well, how can you be critical of the tempting promise of a cure for autism when every day and every hour you pray that the diagnosis turns out to be a mistake?
Unfortunately, parents of special children often have no one to consult with. The topic is narrow, there are few specialists, there are many charlatans, and the advice of ordinary parents turns out to be absolutely inapplicable to children with autism and only exacerbates the feeling of loneliness and misunderstanding. Remaining in this is unbearable for everyone, and you need to look for a source of support.
In addition to the loneliness that special parents experience, they also feel great responsibility and fear.
On Facebook (an extremist organization banned in Russia), there are special groups of parents of children with autism, and you can also read books written by parents who have comprehended their experience, unique and universal at the same time. Universal — because all children with autism lead their parents through hell, unique — because no two children have the same set of symptoms, despite the same diagnosis.
In addition to the loneliness that special parents experience, they also feel great responsibility and fear. When you raise a neurotypical child, he gives you feedback, and you understand what works and what doesn’t.
The sleepless nights of the parents of ordinary children are paid for with children’s smiles and hugs, one “Mommy, I love you” is enough to make the mother feel like the happiest person in the world, even if a second before that she was on the verge of despair from excessive workload and fatigue.
A child with autism requires especially conscious parenting from fathers and mothers. Many of these parents will never hear “Mommy, I love you” or receive a kiss from their child, and they will have to find other anchors and beacons of hope, other signs of progress, and very different measures of success. They will find their own ways to survive, recuperate and be happy with their special children.