Violaine is the mother of five children, including Théophile, the youngest who was adopted by the family nine years ago, and who has Down syndrome. She tells how this little man disrupted their daily lives, pushing them to become “best people”.
- Violaine, her husband and their four children adopted a little boy with Down syndrome at the age of eight months. “There were a lot of discussions, a lot of questions, but in the end, we all arrived aligned with this joy.”
- Trisomy 21 is a genetic disease caused by a chromosomal anomaly: the presence of an extra chromosome in the 21st pair. This can lead to various health problems: delayed motor development, hearing problems, heart disease or even thyroid dysfunction, and a weaker immune system.
- Théophile, now 9 years old, enjoys a fulfilling education in ULIS class and participates in several sporting activities. On the health side, he is followed at the Jérôme Institute: “this center is very valuable for us because we have a whole panel of doctors, medical personnel specialized in this disease who support us and guide us”.
The bell for the long-awaited call rang out one day in April. “Between the start of the adoption procedure and the day we welcomed Théophile among us, it took two years”, Violaine tells me, still moved by her meeting with her son. “The idea of welcoming a child with Down syndrome into my home started with me, but it is obvious that if my husband had not followed, we would not have done it. The same goes for the four children we already had, there were a lot of discussions, questions, but in the end, we all arrived aligned with this joy.”
Théophile was eight months old when he joined his adoptive family. “When we first met, he quickly came into my arms with a big smile, it was very cute and very intense. He was breathing extremely heavily, you could see that he was overcome with great emotion… And finally, he fell asleep against me! Between us, the bond was created very quickly.” Théophile immediately becomes the “mascot” of the four eldest children, very happy to have a new little brother at home, and what’s more, a cute baby.
People with Down syndrome have an intelligence of the heart and a spontaneity that would be good for our society.
Trisomy 21 is a genetic disease caused by a chromosomal anomaly: the presence of an extra chromosome in the 21st pair. This can lead to various health problems: delayed motor development, hearing problems, heart disease or even thyroid dysfunction, and a weaker immune system. As such, Théophile was a slightly more fragile infant than the others: “He had several pneumonias and was hospitalized twice. He also had chickenpox twice, with a terrible infection that escalated the first time, but antibiotics saved him from hospitalization. He also had scarlet fever, with a very impressive fever! But in any case, having a child is always an adventure, whether they have Down syndrome or not… We can have difficulties with children who do not have a disability. In fact, since then, he has rarely been sick.”
Through speech therapy, psychomotor skills and physiotherapy sessions, Théophile grows up and begins schooling in a traditional nursery school. “He had AESH [une accompagnante d’élèves en situation de handicap, ndlr] In kindergarten. He was happy and very inclusive there. In the small section, he was even the class psychologist: when a child was unwell, Théophile always went to see him, which allowed the teacher to know who was not doing well thanks to him. People with Down syndrome have an intelligence of the heart and a spontaneity that would be good for our society.” Théophile is also a source of meetings for the family. “He has a little humor of his own, without filter, which allows him to open doors and make improbable encounters! In our neighborhood he is known as the white wolf, he has his own little charm.” Humor is also an essential educational lever for the parental couple. “We have very true words at home, with dark humor from time to time… Here there are no taboos, things are very calm.”
You have to show your credentials for everything, but I use the theory of small steps and we always end up not getting there! Today, he does tennis, cycling and swimming, which is quite rare for a child with Down syndrome.
Currently, Théophile is 9 years old and has been doing occupational therapy sessions since CE1. He is educated in a ULIS class (localized units for educational inclusion). “He is very happy with seven other children in his class, who have Down syndrome or other forms of intellectual disability. For certain subjects, it goes into inclusion in the same corresponding age group or a little below. Today he knows how to read so we are very happy, but it is true that the gap is widening with other children his age. Physically he is smaller, and intellectually he has more difficulty expressing himself and his attention span is shorter. He also needs a latency time to respond: typically, when we ask him if his day went well, he tells us ‘no’, then later I ask the question again, and that’s it. that he’s going to tell me about his day. This brings us a lot in our home, because even though it is sometimes very annoying, it forces us to slow down! We developed more patience, we became better people.”
If the mother regrets one thing, it is the administrative burden added to her son’s numerous therapeutic appointments. “This requires a lot of organization.“Access to sporting activities is not easy either. “You have to show your credentials for everything, but I use the theory of small steps and we always end up not getting there! Today, he does tennis, cycling and swimming, which is quite rare for a child with Down syndrome.”
On the health side, the young boy is being monitoredJérôme Lejeune Institute, a leading care and research center in France and Europe for Down syndrome and other intellectual disabilities of genetic origin. “This center is very valuable for us because we have a whole panel of doctors and medical personnel specialized in this disease who support us and guide us. We spend an hour and a half there every year (twice when he was younger), and it’s very reassuring because the specialists take stock of his health and progress. It’s comprehensive support because we also talk about schooling, outside activities, etc. This allows us not to miss certain difficulties.”
We want to give him every chance so that he can access a professional activity, a profession in which he can flourish, and that he also has the maximum autonomy that he will be capable of having.
After several years of teaching as an English teacher, then a retraining in human resources, Violaine decided to join this team, becoming responsible for the network and events at the Jérôme Lejeune Foundation. “I organize events like our participation in the Heroes Race, which will take place in Saint-Cloud on June 16. This type of sporting event makes it possible to create places of inclusion and raise funds for research. We also organize meetings between families who can exchange “good practices”, festive evenings where people with disabilities are kings and queens of the “Night to Shine” evening, or even time for parents to take a breather. Also.”
When I ask the mother what she hopes for her son’s future, she answers without hesitation “may he be happy and fulfilled”, as with his other children. “What interests us is to help him progress as much as possible, whether in school or in sports. We want to give him every chance so that he can access a professional activity, a profession in which he can flourish, and that he also has the maximum autonomy that he will be capable of having.”
