“One day, something bad will happen”: the hard life of a Hérault mother of a severely autistic child

Clara se démène pour que son fils Ilyes intègre un centre spécialisé. – DR

À Gigean, Clara Caumet se débat pour que son fils Ilyes, touché par un autisme sévère, puisse intégrer un centre.

Her only moment of peace, a quick shower after leaving her son Ilyes, 9, with the family. And a few hours of sleep at night. And even then, she spends the night holding the hand of her son, who has severe autism. If she lets go, he wakes up… Clara Caumet, from Gigean, confides. On the verge of tears. Red eyes. Fatigue, exhaustion, nerves, despair.

I call her “the faceless child”

“It's simple. Every time she calls me I tremble, says Nathalie her mother. I tell myself every time she has done something serious. If it continues like this, one day, something bad will happen. To her, to the little one”. At the Autism Resource Center in Montpellier, “they tell me they've never seen a child like that”, Clara says. Ilyes pinches himself nonstop. All over his body. Including one side of his head “where the skin is almost raw”. But also and above all, Ilyes lives constantly under a hooded blanket. "I call him "the faceless child". I've never seen him bareheaded", says Clara's grandmother, Nicole. Without a face, without hugs, without much contact and crises as sudden as they are long.

No place in specialized centers

"My son needs support. For permanent stimulation", implores Clara who has visited all the specialized centers. In vain. And some on whom she has been on the waiting list for three years have taken other children in the meantime , she laments."I consider this to be abuse of my child. He needs constant help and no one wants it. Little by little, his condition deteriorates". Because Clara knows that her son can get better. As proof, she cites this week spent at the Saint-Pierre de Palavas institute several months ago: "he spent the week without having a seizure and, in the end, even had fun on the beach with all the children".

A big hour of class per day

Ilyes doesn’t see many children today. Thanks to the fight of Théo, his educator, he has a full hour of schooling every day in the Ulis class at the Lavandins school in Frontignan. That’s all.“To take him, there have to be two of us in the car because he can't stand the seat belt and can throw anything he has at hand”. Nathalie, Clara's mother, is on the trip. “I quit my job to help my daughter, she says. I also gave up my gym classes. We take advantage of the fact that he's in class to do the shopping or little things. But we do it with knots in our stomachs. We never know how we'll find Ilyes. Whether he's having a crisis or not.” For the moment, in fact, no drug treatment has managed to stabilize the child over time.

Stop having a life on hold

The rest of the time, Clara takes care of her son. With the help of the father and the whole family. She participates in several meetings on the subject. Talks from time to time with Siham, the Gigeannaise, mother of Anas, also autistic, who shares her fight on social networks. Sends multiple letters and calls to find a site for her child. “We feel sorry for you, that's all I'm told. I can't take it anymore, she says, her eyes filled with tears. It's no longer possible. One day or another I'll crack. A door has to open”. And Clara has to stop having her life on hold.