A diagnosis is not a prognosis.
Everything hinges on that nuance. You can do nothing about the diagnosis. The prognosis, on the other hand, you can influence. It will be up to you to push back the limits to give your child as much independence as possible and the best future quality of life.

The French medical community asks parents not to act as therapists because it is not their role. In a world where doctors were ambitious and sincerely sought to help disabled children progress, then yes, parents could stick to their already very demanding role as parents.
In our world, with a precious but loss-making social security system, the rehabilitation team rarely offers more than 2 physiotherapy sessions a week, which is the bare minimum for the child not to regress. Parents are then advised to “accept” the situation.
For psychologists, “accepting the situation” means “grieving for the ideal child”.
But no. We are not dreaming of an “ideal” child; we are dreaming of a healthy child able to flourish in the world that awaits them.
“Accepting” the situation does not mean resigning yourself to it.
Accepting means moving beyond the initial feelings of distress, helplessness, anger and injustice, and taking action. There is no point asking “why us?”; it is a question that has no answer.

You are going to discover another world, the world of disability. A world apart. A world full of obstacles and things that defy understanding.
But it will also be an opportunity to rediscover yourself, stronger than you ever imagined.

You will have to knock on doors, find information and ask questions to look for therapeutic, practical and human solutions. Above all, you must dare to question what professionals tell you if it does not satisfy you.
You are the best judges of what is good for your child. You have the right to ask for explanations, to change practitioners and to disagree.

Every day, the value of life will seem different to you. This awareness may make you feel very alone even when you are surrounded by friends and family. You will drift away from some people and grow closer to others. This experience will make you a better, more open person. There will be disappointments and tears, but also encounters with men and women of profound humanity.

People around you will often tell you that you are remarkably brave, but it is not courage that drives you, it is love.

EnoRev’s advice: Make the most of your child’s brain plasticity while they are young.
Stimulate them as much as possible through play, with love and determination. Your efforts will never be in vain. You will see that your “extra-ordinary” child will surprise you when you least expect it.