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, wish to take the little girl to the mini-club “to breathe a little“. The host “spontaneously said yes without looking at Louise closely», Tells his father to Figaro. Then she looks down and realizes that the child is wearing a diaper. “If it ain’t clean it won’t be possible», Answers the host, declining the inscription 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 bitter parents leave empty-handed, their little girl in their hands. “We smile bravely, we say to ourselves that we are not going to cry, the mother of the little girl is sorry on Facebook.
«On s’excuse d’exister»
Since Louise’s birth five years ago, Caroline says “joys and sorrows»Of his daughter and his family on the Facebook page Louise and co, followed by 40,000 people. Write to tell the daily story but also to allay the doubts and worries of being parents of a different child.
After “this umpteenth pinch in the heart», The parents decided not to register either of their two children in the clubs and to privilege the holidays together. “Our daughter would have been the only one in the family without the colored bracelet testifying to membership in a vacation club», Regrets Rémy, the father of the little girl.
Relaxed, parents “had let their guard down“, The host’s refusal sounds like a”slapWhich brings them back to reality. New storm that reminds parents that they are sailing in troubled waters. “On s’excuse d’exister», 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.»
Shared 7,500 times on Facebook and 9,000 times on Twitter, the story of the little girl has moved thousands of people on social networks. Messages of support of indignation and compassion multiply. Touched and touched, Samuel Etienne, presenter of the program Question for a champion proposed to the family to come and attend a program. Proposal warmly received by the father who finally declined, stressing “that on vacation we would like to be able to just rest like the others, without a little stab».
Other personalities were also indignant such as Christophe Beaugrand, Nathalie Goulet, UDI senator from Orne, Frédérique Jossinet, director of French women’s football. All testify to their emotion and encourage a better reception of disabled children.
The painful and recurring “Yes, but»
In September, Louise will return to the nursery school like thousands of other little French children, but “school was a huge struggle», Remembers Remy. Louise is full of life, she knows how to jump, dance, play, laugh, almost talk, but she requires special attention, medical appointments and some 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. “More»We do not have a school life assistant (AVS),«more“We don’t have enough staff,”more“Our supervisors are not trained enough,” but “your child does not speak well enough: a good reason is very often given to justify the impossibility of receiving Louise.
Parents are fighting for these “more“Turn into”and». «The ‘yes but’ generates a ‘no’ behind it, 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.
»SEE ALSO – Clotilde Noël, mother of 9 children including 3 disabled: “Society is very violent towards people with Down’s syndrome”
Help and raise awareness to show that “anything is possible”
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, Life holds 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 raise awareness among the rest of society to “change the way we 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 disabled child is”chance“And essential because it allows”not to be afraid of it anymore», «to see that with small arrangements everything is possible».
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