Autism. A disability that affects an entire family

Stéphanie wants to raise awareness of the autism her daughter suffers from.
Stéphanie wants to raise awareness of the autism her daughter suffers from. (©Stephanie Meesemaecker)

Lucy, three years oldwas diagnosed autistic End of November 2021. Even though she had suspected it since she was 18 months old, her mother Stéphanie Meesemaecker experienced this announcement “like a tsunami”. However, the warning signs were already noticeable in these first few months: “She had that restricted interests and routinesborn didn’t play games, nor with the others Children. she had major sensory disturbances : covered his ears, rolled his eyes and didn’t want to be touched…” says Stéphanie.

Misunderstandings and permanent judgement

While most children her age started the first grade of kindergarten in September, Lucie stays with her mother every day. Secretary Stéphanie therefore had to give up her job. Her husband also tries to support her, often teleworking from home.

For their part, despite their daughter’s understanding of simple instructions, Lucie’s parents are concerned about their own ignorance of her problems and appearance. Even today she only communicates with her body. “Other people’s view of their sister’s invisible disability is also difficult for my two sons. Her brothers are already having trouble understanding her: she doesn’t speak to them.

Lucie therefore started the Makaton Method, a multimodal approach that overlays multiple communication channels (speech, signs borrowed from French Sign Language, pictograms and written language).

A difficult inclusion

The young girl is also followed three times a week by an educator, a psychomotor therapist and a psychologist from the Early Medical and Social Action Center (CAMSP). This center will follow her until she is six years old. There will be a meeting in mid-April to prepare for admission to a public school and this psychologist will be present. The future lover and the elementary school doctor too.

On January 14, Éric Zemmour assessed that “we need specialized institutions for the education of disabled children, with the exception of, of course, people with mild disabilities. Lucie’s mother thinks the presidential candidate isn’t wrong. In fact, he described “real cases, more numerous than we say, where it is an affliction for these children, adding: I don’t want the obsession with inclusion to deprive us and make us neglect the need for specialized facilities.” “Completely concerned about these statements, Stéphanie, like the candidate, denounces the “real lack of associations and structures. »

Missing structures

Despite having two teenagers aged 16 and 12 and their three-year-old daughter, purchasing power is not a problem for the Fertoise family, who benefit from the Education Allowance for Disabled Children (AEEH).

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When autism is recognized, particularly through its World Awareness Day, which occurs on April 2, Stéphanie believes that when “one child in a hundred is affected from birth,” Stéphanie thinks we talk too little about it. The mother of the family wants to change the way people see this invisible disability, particularly through discussion and awareness groups. Currently only Facebook allows him to share his life and that of his daughter.

She also describes the administrative burden and the lack of organizations: “There are many and the delays are very long to get a place in a Medical Educational Institute (IME) and in a Specialized Educational and Nursing Home (SESSAD). . You have to wait years. This worries La Fertoise, even if her daughter will initially remain in the care of the CAMSP until she is six years old.

She lives in La Ferté-Gaucher and would like more autism centers for lessons in kindergarten (UEMA). When her daughter is unable to get into a traditional school, Stéphanie has to drive an hour to Serris, where the nearest UEMA is.

Ewen GAVET

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