Baby has a disability

Parents’ dream of the perfect child is sometimes shattered when they learn of their disability. But today, however, nothing is insurmountable. And then, in front of the love of a child, anything is possible!

Living with a different child

Whatever the little being who has just been born, and whatever handicaps he may have, it is the heart that speaks above all. Because, despite all the difficulties, we must not forget the essential: a disabled child needs above all, to grow up in the best conditions, the love of his parents.

Visible or not at birth, mild or severe, a child’s disability is a painful ordeal for the family, and this is all the more true if the announcement of the disease is made suddenly.

Disabled baby, a terrible feeling of injustice

In all cases, the parents are then overcome by a feeling of injustice and incomprehension. They feel guilty about their child’s disability and find it difficult to accept it. It’s the shock. Some try to overcome the disease by finding a solution to overcome the pain, others hide it for weeks or… longer.

Dr Catherine Weil-Olivier, Head of the General Pediatrics Department at Louis Mourier Hospital (Colombes), testifies to the difficulty in announcing the disability and accepting it by parents:

A mother confides in us as follows:

Breaking through isolation and pain is possible thanks to many associations that provide support to parents and fight to make themselves known and recognized. Thanks to them, families living the same daily life can share their anxieties and help each other. Do not hesitate to contact them! Being in contact with other families who are going through the same thing allows you to break this feeling of being excluded, to no longer feel helpless, to compare your situation with sometimes more serious cases and to put things into perspective. In any case, to speak.

Baby’s daily disability

Everyday life sometimes turns into a real struggle for parents, who are still too often isolated.

And yet, there are parents who, while driving their little boy to school, always have a smile on their face. This is the case for the parents of Arthur, a little Down’s Syndrome. The mother of one of her little comrades is surprised: 

It’s because Arthur’s parents are proud to be able to take their child to school like any other child, and have accepted their little one’s handicap.

Young Arthur’s middle section mistress explains:

Thus, just like him, your baby may be able to go to school, if his handicap allows it, and to follow a normal schooling with, if necessary, arrangements in agreement with the establishment. Schooling can also be partial. This is valid for a little one with Down’s syndrome, as we have just seen or for a child suffering from a visual or hearing deficit.

Disabled baby: what role for brothers and sisters?

Margot’s mother, Anne Weisse talks about her pretty little daughter, born with a cerebral hematoma and who will probably not walk without a device:

If this example is edifying, it is not uncommon for siblings to protect their disabled child, or even over-protect it. And what could be more normal? But be careful, this does not mean that little brothers or big sisters feel neglected. If Pitchoun tends to monopolize the attention and time of Mom or Dad, it is also necessary to devote special moments to the other children of the family. And there’s no point in hiding the truth from them. It is also preferable that they understand the situation as soon as possible. One way to make them more easily accept the handicap of their little brother or sister and not to be ashamed of it.

Empower them too by showing them the protective role they can play, but at their level, of course, so that it is not too heavy a burden for them. This is what Nadine Derudder did:“We decided, my husband and I, to explain everything to Axelle, the big sister, because it was essential for her balance. She is an adorable little girl who understands everything and often gives me lessons! She adores her sister, she plays with her, but seems frustrated not to see her walk. For the moment everything is going well, they are accomplices and laugh together. The difference is enriching, even if it is very difficult to admit sometimes. 

Disabled child: preserving family cohesion

Dr Aimé Ravel, pediatrician at the Jérôme Lejeune Institute (Paris), insists on an approach to be adopted which is unanimously approved: “The approach varies from child to child because everyone evolves differently, but everyone agrees on one point: family support should be early, ideally from birth. “

Later, when they grow older, children with disabilities are generally aware of their difference very early on because they naturally compare to others. Children with Down’s syndrome, for example, can realize from the age of two that they are not able to do the same things as their playmates. And many suffer from it. But this is certainly not a reason to cut baby off from the outside world, on the contrary. Having contact with other children will allow him not to feel excluded or isolated, and school, as we have seen, is very beneficial.

Prof. Alain Verloes, geneticist at Robert Debré Hospital (Paris), sums it up perfectly and projects this child into the future: “Despite the difference and the suffering of this child, he can also be happy feeling the love of his parents and realizing, later, that he has his place in society. You have to help your child to accept himself and to feel accepted and loved ”.

Don’t ask too much of Baby

In all cases, it is not good to want to over-stimulate Baby at all costs or ask him things he is unable to do. do not forget that every child, even “normal”, has its limits.

Nadine explains it better than anyone by talking about her little Clara, suffering from cerebral palsy, whose life was punctuated by physiotherapy sessions, orthoptics …: “I loved her, but I saw in her only the handicap, it was stronger than me. So, little by little, my husband faded away and left me to my madness. But one day, while out for a walk, he took Clara’s hand and shook it lightly to play. And there, she started to laugh out loud !!! It was like an electric shock! For the first time I saw my baby, my little girl laughing and I no longer saw her handicap. I said to myself: “You laugh, you are my child, you look like your sister, you are so beautiful…” I then stopped harassing her so that she could progress and I took the time to play with her. , to cuddle her … “

Read the file on toys for children with disabilities

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