Seine-et-Marne: the daily struggles of mothers of autistic children

Sonia, Sophie and Monique*, mothers of autistic children and residents of Seine-et-Marne, have agreed to share their daily struggles.
Sonia, Sophie and Monique*, mothers of autistic children and residents of Seine-et-Marne, have agreed to share their daily struggles. (©JG/La Marne)

Saturday April 2nd, 2022 was International Autism Day. This disorder affects 700,000 people in France, many of them children. Sonia, Sophie and Monique*, three mothers from Seine-et-Marne, agreed to testify on condition of anonymity. They tell of an everyday life in which everything is a struggle, especially since their children are confronted with society: in school, the canteen, the leisure center…

Sonia, whose little boy has autism spectrum disorder, is annoyed:

If a mother asked me what she should do before starting school, I would tell her to get a lawyer and legal protection insurance.

Inclusion in school: very different situations

“This year we breathe. But we’ve been through hell. Until you wish to move! says Monique, whose daughter has been diagnosed with ADHD (Attention Deficit Disorder with/without Hyperactivity). Sophie, whose son also has ADHD, has changed schools several times with her child.

For them there is discrimination hidden: “We don’t let him play with the other ball! For her part, Monique says that she has already found her daughter locked in a room alone because she had a seizure. But today she has “a good mistress” who “color-codes her tasks to rate the week”. , says the relieved mother.

For the other two mothers, the lessons are not going “too badly”. Sophie’s son loves school and Sonia’s braces: “That depends entirely on the teacher, but not everyone is trained in autism disorders, including the AVS (school assistant, editor’s note)”. Your children often blame a delay in their learning and sometimes have to repeat.

Your children excluded from the canteen and leisure centers

But the school is also the canteen, the times outside the curriculum and outside the curriculum – at the expense of the cities. According to the mothers, the shoe pinches here. None of her children have access to the leisure center and all have been barred from the canteen.

Through negotiations – even legal action with the defender of rights – some of their children can have lunch with their classmates again.

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Sophie complains:

Nothing is planned for our children. The canteen, the break… these are difficult times for them and it wouldn’t take much to improve them. We have the impression that everything is done for neurotypical or severely disabled children. But there is nothing between the two.

“We sink without empathy”

Like the other mothers, her son was excluded from it canteen. She had signed him up at a recreation center holidaysbut she was recalled 15 days before.

I was asked to organize because he couldn’t walk. I’m a single mother with three children, I spend my time going to and from school, mostly without the canteen.

The schedule worries her and she had to change jobs. In addition to sacrifice his career, she lost 50% of a good salary. “We’re clearly being sunk, with no help, no empathy.”

Consequences for the whole family

Sonia, she tried to take her son to the leisure center for the first time this year. Since then it has been complete judicial fight.

I’m doing it because I’ve noticed that many families are giving up. Because they don’t dare, they don’t know their rights. I fight for my son and for everyone else.

She also emphasizes importunity of certain interviews and calls:

We are asked questions that other families would not be asked. For example when we work. So if a parent is unemployed, they can’t leave their child at the facility?

However, this exclusion is from extracurricular time robs these children of collective time. “My son no longer has any social ties. They talk to us about inclusion, but we organize exclusion,” says Sophie. “My daughter has never been invited to a birthday party. Things are going better this year and she’s starting to make friends,” adds Monique.

A sense of isolation

All testify to a feeling of isolation. When the MDPH (Departmental House for the Disabled) is their point of contact, they only make the law and make the necessary arrangements for each child, which means no supervision. “It’s up to us to fight with the National Education or the cities so that the recommendations are applied,” explains Sonia.

So they advise each other. “Before I met the other moms, I thought it was just my daughter that was the problem. Today I understand that I’m not the only one,” says Monique.

Maître Vocat, a lawyer specializing in these issues, confirms this isolation:

90% of families choose homeschooling to avoid these problems. And there is a great deal of ignorance of the law, even within National Education or the MDPH… These are sources of administrative abuse to the point that families are afraid of government services.

“Everything is there on paper. But in fact there is still a lot to be done to really involve children with autism disorders,” concludes Sonia.

*Names have been changed.

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