Jessica is our third baby girl. Like any youngest, she followed suit. Sitting in her cozy, she attended the spectacle of her two older sisters who gesticulated around her. She was wide awake and walked and spoke very fast. Growing up, we noticed that she was quite clumsy, which made us all laugh, because if there was a glass of water near her, we knew it was going to end up being knocked over. But what child is not clumsy at 3?
Today, I don’t know if it was the beginnings of his dyspraxia that were emerging. But after a month in junior section, her teacher summoned us, alerting us that Jessica was not doing things like the other children in her class. She struggled in all kindergarten school learning, namely cutting, gluing … Everything we call fine motor skills. That’s when Jess, who is right-handed, started to “forget” about her left hand. She was functioning quite normally, but she was not using it. His arm rested alongside his body as if an entire area was dormant. Besides, in the morning, we would say to him “Come on, it’s time to wake up your sleeping hand”, but nothing helped.
In video: Dyspraxia
I think that if all these demonstrations had happened to my oldest, I would have blamed her mistress on the pretext that she stigmatized her. However, having raised two other children (who also had the same teacher), I realized that something was wrong.
With my husband, we made an appointment with a neuro-pediatrician, but the wait being six months, we decided to take the lead. Me, I started to search the internet like crazy, typing in key words such as “clumsy child”. And that’s when I first read this term “dyspraxia”. I had never heard of it, because seven years ago this learning disability was not as well known as it is today. The pediatrician had our daughter tested and immediately confirmed that she was suffering from this disorder which affects the planning of gestures. This results from a disorder in the area of the brain responsible for motor skills. On the other hand, as is often the case with dyspraxia, the doctor told us that his neurovisual assessment was bad. She had difficulty locating the elements in space, orienting herself or organizing her gaze.
I did not accept the diagnosis from the start. I needed to look for a cause in order to find a solution. I then left in all directions, even consulting specialists in heavy metal poisoning, allergies … It was at this time that I made the decision to stop working, to devote myself to this research and take care of my daughter. The results all overlapped, the various health professionals were categorical about his dyspraxia. I had not found the cause, but it was urgent to treat the consequences.
We saw our daughter more and more tired, fragile, and above all isolated from the other children of her school. However, the director and the entire teaching team mobilized strongly. Jessica even had an AVS in class with her, but the rehabilitation protocol for “dys” children is not easy. I constantly had to take her out of school to take her to see different specialists: psychomotor therapist, orthoptist, psychologist. She was out of step with other people all the time, and despite her best efforts, she couldn’t keep up with the school schedule.
It was during his year of CP that we said to ourselves that we needed to help him even more. Jessica understood everything the teacher taught, as long as the materials were oral. Dyspraxia means that the child suffering from this disorder must have a differentiated pedagogy, which is not easy for a teacher of 30 children! Jess needed large print, very airy pages with only one major piece of information per medium. She could not transcribe her knowledge in writing either because she could not automate her actions.
Seeing our happy little girl at home, so smart, fine and brave, putting in so much effort that didn’t pay off was heartbreaking for me and my husband.
Despite the reluctance of the doctors around her, we then decided to enroll her in a private school specializing in dys children. We were told that she had to stay in the classic system, but we felt more and more unhappy, something had to be chosen! This school had just opened and the specialists who followed us having no hindsight, they did not dare. We do.
Did we make the right choice? We can’t say for sure, but upon entering this school, Jess acquired a form of ‘school normality’. All of the children had a learning disability and she no longer felt marginalized. She gained self-confidence because the teaching team decided to focus everything on reading and leave writing for later. Children have a computer available, and lessons with an occupational therapist to help them use this instrument as quickly as possible, which frees her enormously. She no longer has to run around to see the various rehabilitation specialists either, as they are all present at school. I don’t see her as exhausted as before. Jessica has enormous courage, because with each apprenticeship that she manages to integrate, she knows that she always has another mountain to climb. She always starts by stepping in at each new step, the fear of not getting there grips her, but in the end, she always goes back to the fight!
You should know that this disorder is unfortunately irreversible. The child is actually taught to work around difficulties and approach things from another angle in order to achieve a goal.
Some time ago, the doctors made her have an electroencephalogram because she showed certain small “absences”, and it turns out that our daughter suffers from repeated micro-epileptic seizures, day and night. We have another avenue that also allows us to treat his fatigue, thanks to a treatment that works well.
Of course, everyday life is not easy. Jess is now 10 years old, and with my husband, we are still dressing him, brushing his teeth, in short all the little things we do to a 3 year old child. Our daughter is growing very slowly. Also dealing with those around us who tell us that our child has nothing serious annoys us deeply. Sometimes we are exhausted, but we support each other a lot. If one fails, the other always takes over. Before Jess was born, we were going through a complicated time as a couple, but thanks to our daughter, everything was swept away and we are more united than ever. Jess makes us see things differently. Her sisters do not give her special “gifts”, and the three of them live by the rules of any sibling. They love each other, bicker, reconcile, like all brothers and sisters. Personally, I got off center. I only want serenity, well-being and peace in my home. It was Jess who brought us all of this.
We do not think about the future, even if dys disorders are well recognized today and we have before us many examples of children who have succeeded in school, but also have completed higher education. We are thinking of his 6th. Are we going to look for a public college with inclusive education, or are we going to leave it in its current school? We will see. Every day is a gift to my daughters who are all three extraordinary. It’s normal, they are my children!
Interview by Dorothée Saada