Motherhood for which I was not prepared. What is it like to be the mother of a child with autism?

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October. Morning. I walk with my four-year-old son in the autumn park. Leaves rustle underfoot. Funny sculptures of raccoons, dogs, and foxes with long-removed plaster ears, placed between the trees, cause the kid great delight. For a moment, it even seems that my motherhood is not much different from millions of others around the world. But one fact quickly brings me back to reality.

My son and I are walking in the park on the territory of the psychiatric hospital. Just left the child psychiatry department. Another doctor’s consultation. My son has autism. And this is motherhood, for which no one prepared me.

No one told me that one day I would turn on the TV, and there the host of the national marathon “Edyni Novyni” would be discussing Putin’s behavior live with the adviser to the head of the President’s Office, and would compare the main war criminal with autistic people. So he will say: “Very similar to autism.”

I will watch this video several times, look at my still small and smiling son, who will happily show off the plaster raccoon, and everything inside will shrink. What? What should I do so that such shameful comparisons never happen again in the society in which he will grow up? And is this included in the basic mother kit?

“You don’t seem to like me,” the speech therapist of one of the private Kyiv clinics told us two and a half years ago and, lowering her voice somewhat, added. “It seems… autism here.” Then we turned to her, because our almost two-year-old son still hasn’t started talking. For some reason, we did not notice weak eye contact, absence of a pointing gesture or reaction to a name. Although these and other signs were already there, they simply shouted to us about a possible autistic spectrum.

And then everything is like in a fog. Search for information, specialists and corrective routes. Numerous consultations, examinations, diagnostics and, of course, the most difficult thing – acceptance. A long way of accepting that your motherhood will never be the way you dreamed it would be, and life has irrevocably changed. Unfortunately, it is impossible to be a “normotypical” mother in Ukraine if your child has autism.

In a country where the post-Soviet legacy of rejection of otherness is still insurmountable, and the stigma around autism is so strong that your parenting experience is doomed to be painful from time to time.

Being a mother of an autistic child means catching the eyes of neighbors, mothers at playgrounds and ordinary passers-by, because your four-year-old still doesn’t speak, and instead of calling “mommy” like cute round-cheeked babies usually do, he just screams.

By the way, catching silent glances is not the worst option. Sometimes you have to answer not very tactful questions like “Why is he so big and doesn’t talk, is he sick?”. But the worst thing is when, after your attempts to explain that it’s just autism, and it’s not a disease, but a developmental feature, they silently take their children away. The fact that autism is not transmitted, you most often do not have time to explain.

Being the mother of a child with autism means taking a deep breath and counting to ten every time you are rejected from another kindergarten. Or even worse – they don’t refuse, they find a place, but exactly a month later they ask not to come to the kindergarten again. And all because your three-year-old son bit another boy when he tried to take a toy from him. And to your completely logical question: “Do three-year-olds never bite each other?” the manager calmly answers: “They bite, of course, but they don’t have a diagnosis. What will I tell the parents?”

And even when you do manage to find the kindergarten of your dreams for your child, and it must also include a tutor, you cannot, like any other mother, leave the child for the whole day in order to have the opportunity, for example, to work, but only by half After all, the other half of the day is occupied by corrective classes: speech therapists, psychologists, sensory therapists, physiotherapy, swimming pool. Everyone’s list is individual, but equally long.

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Being a mother of a child with autism means learning not to compare every day. Your son with his peers, only with him yesterday, and rejoice at every small victory. I learned to jump – a holiday. Learned the green color – bravo, what a great guy. I finally said “give me a spoon” – wow, this is a victory. Yes, of course, at this time, cute four-year-olds on the playground nearby will speak complex sentences and invent fantastic fairy tales. But as soon as you allow yourself the weakness to compare them, instantly – a wound. Your motherhood is a marathon, and only inner resilience makes it possible to run it.

Being a mother of an autistic child means making remarks, often in public, to anyone who uses the word “autistic” as an insult, without even thinking about the harm they are causing. This is to explain to an adult media psychologist why her comparison on the air to an audience of half a million that “Russia is autism on a national scale” is blatant ignorance and public cementing of an already terrible stigma. This is writing to a private school, why refuse a child with autism to participate in a summer camp – this is not about the values ​​that are written on the website next to the price. It’s teaching people you know and don’t know the correct terminology. And rejoice in a childish way when they use it in public.

To be the mother of a child with autism is to hate the shabby corridors of the state child psychiatry. After all, in some mandatory processes, there is simply no private alternative. It is sincerely not understood how in cold offices, the walls of which are covered with fungus and mold, a child can demonstrate at least some cognitive abilities. But the official diagnosis depends on what this child demonstrates in these walls. And with it, benefits and services are possible for this child. Because for someone, for example, free classes at the state IRC are the only available correction. After all, there is simply no money for private lessons. But where is there any objectivity in this whole process? And where are the shabby, moldy walls about dignity? The dignity of the child.

And being the mother of a child with autism means waking up in the middle of the night with fear. And will he ever speak? Will he go to school? Will there be a kind and empathetic teacher’s assistant? And the child’s assistant? Because the law is not bad, in fact, says so, but in reality for some reason it is completely different. Won’t one day appear in the parents’ chat room a collective statement to remove your son from this class. He said that the teacher’s attention is lacking even for “normal” children. Yes, unfortunately, such statements still happen.

Will he ever be able to be independent? And the question that usually takes my breath away and makes my heart beat faster: what will happen to him when I’m gone? Being the mother of a child with autism is not about having answers.

Olena Pshenychna, mother of a child with autism, consultant of projects for children with ASD of the Children’s Voices Foundation, especially for UP. Life

Publications in the “View” section are not editorial articles and reflect exclusively the author’s point of view.

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