Brown hair, hazel eyes, a laughing face, Louise looks almost like any child her age. However, she has a small genetic peculiarity, she is a carrier of Down's syndrome.
On August 2, while the family is on vacation at a campsite in the south of France, Rémy and Caroline, her parents, want to take the little girl to the mini-club " to breathe a bit ". The host “ spontaneously said yes without looking at Louise closely, ” her father tells Figaro . Then she looks down and realizes that the child is wearing a diaper. " If it is not clean, it will not be possible ", responds the host, declining the registration of the little girl. The mother tries to explain that her child has a non-binding handicap and that for three hours in the day, the diaper will not be an obstacle for the animators. Too complicated for the kids' club, "et then, a moment of inattention, the animators are not really trained ... "The parents, bitter, leave empty-handed, their little girl in hand. “We smile bravely, we tell ourselves that we are not going to cry, laments the mother of the little girl on Facebook.
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"We apologize for existing"
Since Louise's birth five years ago, Caroline has shared “ the joys and sorrows ” of her daughter and her family on the Louise and co Facebook page , followed by 40,000 people. Write to tell the daily story but also to allay the doubts and worries of being the parents of a different child.
After " this umpteenth heartache ", the parents have decided not to register either of their two children in the clubs and to favor the holidays together. " Our daughter would have been the only one in the family without the colored bracelet testifying to belonging to a holiday club ", regrets Rémy, the father of the girl.
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Relaxed, the parents “ had let their guard down ”, the leader's refusal sounded like a “ slap ” which brought them back to reality. New storm that reminds parents that they are sailing in troubled waters. " We apologize for existing, " laments the father. Since the discovery of their daughter's disability, the crossing has not been without difficulty. “ This story is a drop of water in the battles we wage. "
The painful and recurring " yes but "
In September, Louise will return to the big kindergarten section like thousands of other French children, but " school was a huge struggle ", remembers Rémy. Louise is full of life, she knows how to jump, dance, play, laugh, almost talk, but she requires special attention, medical appointments and a few small adjustments to the schedule that the structures are not always ready to adopt.
Parents face " thousands of variations on the 'but', hundreds of registers: the 'but' firm, the 'but' sad, the 'but' sorry, the 'but' empathetic ... ", explains Caroline . “ But ” we don't have a school life assistant (AVS), “ but ” we don't have enough staff, “ but ” our supervisors are not trained enough, “but” your child does not speak good enough: a good reason is very often put forward to justify the impossibility of receiving Louise.
Parents fight for these " but " to turn into " and ". " The 'yes but' generates a 'no' behind, whereas if I say 'yes and we will make it possible', the message is quite different ", pleads Rémy, convinced that a change in mentalities is possible.
Help and raise awareness
Being the parents of a disabled child is a daily life punctuated by moments of happiness, pride, but also anxiety and exhaustion. A poignant and moving testimony offered by parents on social networks or in the two books written by Caroline, La vie reserve des surprises and The Louise effect.
Drawing on their experience, Caroline and Rémy want to help other families with a child with Down's syndrome and educate the rest of society to “ change the way people look at difference ”. “Everyone is in favor of a more inclusive society, but no one is ready to accept the consequences that come with disability. "For Louise's father, living with a child with a disability is" luck "and essential because it allows" no longer to be afraid of it "," to see that with small arrangements everything is possible ".