When our perfect child is diagnosed with atypical development, we are overwhelmed by preconceptions and a cocktail of emotions. For any parent, this is dismay! Doubt, pain and misunderstanding follow.
Quietly, hope regains its path and leads us to the courage needed to take this irregular path. You learn resilience the hard way.
Having a child with special needs is a great life lesson. For all those parents who have to deal with the announcement of a diagnosis, know that you are not alone. Between 5 and 8% of parents share this reality.
Two eyes, one nose, one mouth and ten fingers! Everything is there! He is perfect! Everyone smiled. It's the start of a new life! The joy of being a parent!
Two eyes, a chin, some hair and peach skin! Everything is perfect! We are already planning our future!Two eyes, one heart, one mouth and ten toes!
A doubt. The doctor asks himself… What is going on? Why?
Then comes the wait. That of an appointment, then that of registration on a waiting list. Then we wait atphone because we want to speak to the receptionist and we also wait in the waiting room to finally have access to the professional. Finally, comes the wait for the report and the treatments. At this moment, the parent is then taken with this worrywhich grips him, which he cannot suppress and which fills his days, his sleep, his work, his couple, his relationships.
Two eyes, one smile, two legs and full of hope. But EVERYTHING is there, isn't it?! And yet. The scans, the exams, the evaluations… The hesitation, the words and the silence. A formal announcement, and it becomes official. We just snatched the perfect child from you.
When the diagnosis is announced, there is confusion, misunderstanding and often refusal. We realize that we may dream and plan, but we do not choose. Life plays tricks on us with bitter humor. Then follow the “why” and the “how”. Slowly, over time, resilience sets in. Once there, all we can do is welcome and cling to the only intact thing we have left; the loveyou have for your child.
The mourning of the perfect child is known to be one of the worst trials to live because it is continuous. At every stage of development, the parent is confronted with the gaps between what is wanted, what is desirable, and where the child really is. The comparison between this child and the others is continuous while his reality is different.
The parent is told that each child is unique,but he finds that the whole world still automatically makes comparisons every day, every hour. And each time, there is potential for disappointment. At each stage, the parent must draw on their resources to adapt, once again, and to accept.
It is not easy to tame your gaze to be able to compare your child to himself and highlight his progress. Caught up in the normal ambivalence between “doing everything to save your child” and “respecting their pace”, it is difficult to learn to take a unique look at the progress of a child with special needs.
There is no school to be a parent, let alone to be a parent of a child with an atypical profile. The best school is experience.
Several moments will accompany the parent in the construction of a look of uniqueness and acceptance of the potentialof his child. Some examples: another parent who shows compassion, a professional who manages to name the signs of progression (outside the developmental grids) or even a gesture of inclusion from a stranger.
Living with a diagnosis for your child also means learning to deal with the reactions of those around you, family and friends; they too express their insecurities and emotions. Sometimes support and advice is good, sometimes you have to ignore to preserve relationships.
Dealing with the reality of a child with a particular path also means reconciling work schedules,medical appointments, follow-ups with professionals and family commitments. This complexity leads the parent to completely change his organizational management and very often, he does not perceive all the dedication he brings to his reality. “You try hard to hold on, but you feel like a rubber band that you always stretch a little more until it gives way,” writes author Kozminski, C. in the book Supporting and accompanying the sick child (published by Sainte-Justine, 2015).
Then little by little, over time, we learn to love our new reality and appreciate each step. Since the future is uncertain, we agree to no longer predict it and to make our way, one step at a time, on the road to hope. To our great surprise, some even find themselves thinking that if the diagnosis were to fall, life would no longer have the same flavor…
Two eyes, one nose, one mouth and ten fingers! Everything is there! It's perfectly imperfect!