While France’s delay in terms of schooling for children with disabilities was once again in the news this week, a family from the Riviera bears witness to the ordeals they have gone through.
Frank and Juliette (1) are parents of two teenagers aged 15 and 13. Loving and responsible parents who, at no time, put blinders on when the problems presented by the eldest sibling were revealed.
“From the age of two, when he was in daycare, we were summoned, and we were alerted to his atypical behavior; he was fleeing, aggressive at times, and swayed a lot.”
“He is unmanageable”
Maxime will benefit from three assessments in different structures which will conclude with the same diagnosis of complex autism spectrum disorders.
A disability rate greater than 80% is attributed to the child. Recognition “official” of the handicap that Maxime carries, but who will not even have the virtue of“to tenderize” the family environment.
“As our son’s disability is “invisible”, people hastily conclude that he behaves like a child tyrant, when he has outbursts of anger or is irritable…”
And immediately cast an accusatory look at the parents. Maxime speaks very loudly, he is hyperemotional, hypersensitive, very quickly feels attacked, opposes, provokes…
While the young couple must manage the child’s invasive disorders on a daily basis, they also come up against the system when it comes to sending Maxime to mainstream schooling.
“For four years he was schooled in Ulis (private class for the education of students with disabilities) within a college, but only two then three mornings per week, while he benefited from 32 hours of AESH (Accompanying students with disabilities). We were told that it was impossible to take care of him, that he was unmanageable…”
“Why am I alone?”
If Maxime’s parents recognize that their son can be difficult to control, they deplore the painful ordeals he was forced to experience during his chaotic schooling.
One example among others: in the midst of a health crisis, when the teenager is unable to wear a mask – a situation that is too anxiety-provoking for him – he will obtain an exemption but will have to spend the year 2020… in the lead. head with his AESH in a small isolated room at the school! An almost inhumane situation. “Why this rejection of others? Why am I alone?”he asks.
Juliette is forced to quit her job. Who else to look after the child, especially during the long periods when his AESH is absent, and he finds himself out of school?
This combative mother will mobilize all the means at her disposal to offer her son the best possible life. “normal” possible, despite his disability.
“We know that what is most important for him is socialization… We are well aware that Maxime will not be able to go to high school. But we would have liked him to attend college for one more year, which would would have given us a little time to organize the rest; especially since, due to the absence of his AESH, Maxime was absent for almost a year; but it was a definitive “no” that was given to us by the rectorate.”
This 2023 school year, Maxime will therefore not have been able to do it in his college. He is now welcomed every day of the week, from 8 a.m. to 5 p.m., in IME (Medico-Educational Institute) (2)among children who present extremely serious disorders.
“Cut off from the friends he had at college, he lost his bearings…”sadly reports the couple, who deplore the hypocrisy of a system.
“We must stop saying that all children must be welcomed, we must also stop talking about inclusion. Inclusion is more an idea than a reality”.
United to face challenges
If today, Juliette and Franck speak of their child as a “gift of life” – “our child is certainly annoying, but he is also very endearing, and so alive!” – their pain is palpable when they talk about rejection from the outside world.
And everything they had to endure. “Fortunately we are united to face all this.” But their gratitude is just as great when they talk about these (too rare) people who extended a friendly hand to them.
It is with tears in her voice that Juliette remembers this department head who understood everything she was going through. “She was extraordinarily kind.”
To all the others, all those who did not understand, Maxime’s parents send this moving message: “We are not trying to get the moon; we only want Maxime to be considered like any other child, like the innocent child that he is, fragile, sensitive…”.
And for him, with him, they draw the happiest possible future: “We know that he will not pursue law or medicine, but he loves nature, water too, he is sporty… Why not dream with him that he will one day be a gardener for example?… “
1. All first names have been changed, at the request of the family who wished to remain anonymous but are willing to discuss with other families concerned. Email: [email protected]
2. Establishments which welcome children and adolescents with mental disabilities, generally aged 3 to 20 years old.