MY CHILD HAS KOOLEN DE VRIES SYNDROME

Today a diagnosis has been made but your child is the same as yesterday and deserves the parents that you are.

You did not arrive on this site by chance ...

Do you feel bad, isolated?

Don't you really understand what's happening to you? Or, maybe, are you relieved?

Are you wondering how you are going to be able to face the next few days, the next months and even the next years?

Your doctor did not have the tact you expected when he told you that your child has Koolen de Vries syndrome, you may feel that he did not take the time to give you enough information, to respond to your first  Questions. He may not have known or been able to direct you towards other confreres, other families, our association.

Whatever the age of your child, the doubts you may already have, the announcement of a disability in his child is always difficult to hear. It is an ordeal during which you will go through different stages, which will take more or less time (sometimes years), depending on each person, their history, their education, their culture or their beliefs. One thing is however certain, you will walk. Often alone, at your own pace, and not necessarily in tune with your spouse, your other children, your parents or siblings, but you will walk. The other parents who have gone through this ordeal before you are neither supermen nor heroes. Like them, you will overcome, you will learn.

The first of the stages, in which you are certainly in reading these lines, is a state of bewilderment: you have the impression of being sucked in by emptiness, of being in the blur or in the dark.  total. Or are you in a state of disbelief? It is quite simply  your psyche which refuses to integrate such a shock and which, by this fact, gives you time to get used to the announcement.

  

Then will undoubtedly come the time of the denial of reality: you will try to find all the points which could indicate for your child an error of diagnosis (such or such progress, such or such morphological difference), a possible cure.

Then you risk going into a state of anger. Anger against others: a loved one (often the spouse), a professional body, an institution. Because you haven't seen, because others haven't alerted you.

Turned against you, this anger can lead you to a state of depression. In this case, it will be necessary to dare to ask for psychological or psychotherapeutic assistance.

Later, you will cry, maybe a lot, you will enter a phase of mourning, of sadness.

 

Then, you will come to understand that, while your life will change for sure, it will be worth living this way because you will be overtaken by the happiness, the joy and the pride that your child gives you.

Today, despite the shock of the announcement, if you could just keep in a small corner of your head that:

- You are not responsible for this situation

- Your role as a parent remains the same: to love, care for, educate, support towards autonomy (without overprotection and by accepting experiences) so that one day, your child who has become an adult is fulfilled and has confidence in him or her in the life that will be his

- The dreamed, imagined child does not exist, it is built day after day, with you but also in society

- Like all parents, you will continue to evolve, often thanks to your children, whether they are Kool or not

 

So I promise, past the shock of the announcement and the trials that will follow, there will be room for great and small happiness.

Remember, you are part of the Kool Kids family and they live up to their name very well.

When and through what seems best to you, do not hesitate to contact us, we have gone through what you are going through, we can undoubtedly accompany you, share and answer your first questions with ease. and without judgment.

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