In France, some parents are in great dismay. While around ten million students are in school, other children remain on the sidelines and struggle to find a place in an establishment due to their disability. It is estimated that there are a total of 11,000 waiting for a place in a medical-educational institute. Among them, there is Kahil, 9 years old who was born with a motor and mental disability. Meeting with Kahil, his parents Iteb and Jean-Christophe Moreno and his sister Inaya, in a play park in Gênas, in the Lyon suburbs.
He’s a little nine-year-old who can’t sit still, his mother tells us: “ He loves to play, he moves a lot, a lot, a lot. He really needs contact with people. He asks for this. He is a child who has the joy of living. » And this is also the opinion of his father Jean-Christophe: “ It’s hard to stop him, he’s the type of little boy wherewe look for the button to turn it off, because he is always running, jumping. »
Khalil suffers from Rubinstein–Taybi (TRS), a rare disease that causes physical and mental retardation. Aged nine, Kahil has the mental age of a child of one and a half years old, he does not speak. It is easy to understand that even the Ulis system, which offers adapted education within the school, is not made for him. “ It’s a good device, but it’s not suitable for Kahil’s disability, because Kahil is disabled at 80 %deplores his mother, Iteb. This is why he needs a suitable school. He is enrolled in several specialized schools. We call IMEs (Medico-educational Institute, Editor’s note) He’s been on the waiting list for six years. We had a lot of refusals, no one takes Kahil. »
However, the little boy could progress and flourish. But for this, he needs a multidisciplinary approach provided by an IME, as Jean-Christophe, his father, explains: “ In these institutes, we have professionals from each profession, psychomotor therapists, psychologists, physiotherapists and therefore a medical staff who will be able to support them throughout their life. “schooling”so that at least they can make it progress. »
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“ Nothing is suitable for disabled children »
Only, the number of places in IME has not changed for 20 years. Iteb denounces the hypocrisy of leaders when they talk about inclusive schools: “ In their speeches, it is “We include disabled children.” In reality, this is not the case at all, nothing is adapted for disabled children, it’s an ordeal. So it’s not inclusion, it’s quite the opposite. »
Lacking a solution, Iteb and Jean-Christophe had the idea of opening a Big Top, a huge play park to occupy and take care of their son. “ He You always have to be on the alert. Look, since earlier, I’ve been staying with Kahil, watching him because you never know. There is no time for respite, except when he sleeps. »
No schooling therefore for Kahil and inevitably consequences on family life. The nine year old takes up a lot of space. But Inaya, her little sister in a princess dress that day, does not feel jealous. From the age of six, she understands that her parents take special care of Kahil. “ It’s not serious. I know how to do it, I don’t need help and I love my big brother more than anything. »
The little girl takes the hands of Kahil, who swings his arms, and sings him a song.
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