The delivery of the diagnosis.
Being told that your child has a disability for the first time is like getting suddenly hit by a wicked wave while you were peacefully sailing on your boat and everything was fine. Then you have two options: trigger the distress beacon and wait for a hypothetical rescue, or keep your composure and look for solutions.
And you know which option we chose; we decided to keep our chins up and make sure our little sweetie was happy, whatever the cost.
A diagnosis is not a prognosis. The nuance between the two words is essential. You cannot do anything about the diagnosis. On the other hand, the prognosis will depend on you. You will have to go beyond your limits to give your child as much autonomy as possible and the best quality of life in the future.
LIn France, the medical community asks parents not to interfere with the therapists because it’s not their role. In a world where doctors would be more ambitious and would really try to get disabled children to progress, then yes, parents would be able to stick to their role. In our real world, with a precious but loss-making health care system, the rehabilitation team rarely offers more than two sessions of therapy a week, which is the minimum for the child not to regress. Parents are often told to “accept” the situation.
For Psychologists, “accepting the situation” means “mourning the ideal child”. But it’s not the case. We are not dreaming of an ideal child, we are simply trying to nurture a child and allow her to grow and bloom in this world.
“Accepting” the situation doesn’t mean resigning. Accepting is going beyond the first reactions of distress, despair, anger and injustice to move into action. No need to ask “why us?”, there is no answer to that question.
You are also going to discover a new world, the world of disability. A world apart. A world filled with difficulties and other non-logical things. But it will give you the opportunity to rediscover yourself, stronger than you ever imagined you were.
You will have to push doors, find information, ask questions to find therapeutic, material and human solutions. Above all, you will need to dare cast a doubt on professionals’ answers if they don’t suit you. You are the best judges of what is good for your child. You are allowed to ask for explanations, to look for somebody else’s opinion and to disagree.
Each and every day, life’s value will seem different. This consciousness may bring a feeling of loneliness even when you are surrounded with friends and family. You may lose some but you will get closer to others. This experience will change you into a better, more open person. There will be disillusionment and tears but you will also forge deep human relationships.
Your relations will often praise your courage but it’s not courage which motivates you, it is love.
Enorev’s advice: make the most of your child’s cerebral plasticity while he / she is young. Stimulate your child through games with love and determination. Your efforts will never be in vain. You will be surprised by your “extraordinary” child at times you would not have expected it.