Isabelle, a devoted 41 year old single mother, always has a lively home life! The reason for this is her 4 children who sometimes play with each other: Mehdy (8 years old), Isma (10 years old), Kawthar (14 years old) and Yanis (20 years old).
Often at the origin of the excitement of the youngest, the impressive cries of Kawthar which resound through the walls of the apartment. Kawthar, affectionately called “Koko” by her mother, is a young girl with multiple disabilities and severe microcephaly, a disability that has caused her brain to develop much less than it should.
She also suffers from a physical handicap, she cannot stand for long without falling and therefore has a wheelchair. As soon as she was diagnosed, Isabelle immediately reorganized her life.
“I wanted to be available for Koko, so I decided to work part-time to have a balance between my professional and family life. Also, I work as a caregiver for severely disabled children, I can use the experience I have in my daily life with my daughter to help them.”
When Koko is not at Isabelle’s home, she is at the SESAP, a center for disabled children with behavioral problems. Due to the lack of available places, she could only go there from the age of 10. There, Koko does a lot of sensory play but according to Isabelle, things are sometimes difficult.
“When Koko is having a bad day, she can scream from morning to night and the staff has to use earplugs. And without her medication, she would hardly sleep at all,” she says.
Whether it’s shopping, dining out or going to the movies, Isabelle has to adjust her schedule for all the simple tasks of daily life. When asked about people’s behavior with Kawthar, Isabelle is optimistic.
“There is a lot of kindness. Often the children are curious, which is normal. Sometimes they ask me what’s wrong with Koko and I tell them that she has a handicap. I think it’s good that they ask questions, it allows them to learn about disability!”
“Don’t take the fact that your child is disabled personally. You will learn a lot from him or her, you will spend beautiful moments with your child and experience things that would never have happened if they didn’t have a disability. Would your life be better? I don’t know. You have to transform the difficulty into something beautiful and enjoy life with your child!”
Isabelle also has a message for parents of disabled children.
Good luck. We wish the best for Isabelle and Koko !