“And you, Vânia, what does your son do in life? »
The question is trivial. It arises naturally in the course of an informal conversation between parents of young adults who know each other little or not at all.
This is an opportunity for one to brag about his eldest in training in a large law firm. Or for another to talk about the first solo trip of his younger sister to Europe.
“Mine works at Loto-Québec,” replies Vânia Aguiar, mother of Henri-Louis, 27.
An answer that seems trivial if we do not know the career of this former international model committed to improving the lot of children living with moderate to severe intellectual disabilities, with or without autism spectrum disorder.
Henri-Louis is the “most imperfectly perfect child I could have”, sums up the one who made a career in a universe where nothing less than “perfection” was demanded of her.
Living with an intellectual disability, her son does nothing alone. He needs help washing. To go to the toilet. To dress. In the middle of winter, he can go out in sandals, without a coat, “so that everyone can clearly see the Canadiens logo on his sweater,” she says with affection.
But thanks to the hard work of his mother, Henri-Louis is now doing an internship at Loto-Québec which will soon turn into a full-time job.
“You can’t imagine the pride that it represents when you have a child like mine,” says the one who is president of the Fondation Les petits rois.
torrents of tears
Mme Aguiar will never forget that day in 2001, when she visited Saint-Pierre-Apôtre public school in Montreal. She meets dedicated, benevolent staff, but the establishment lacks everything.
“After the visit, when I got into my car, I started crying,” she says. I repeated to myself: it’s not possible. »
Three-quarters of the students’ families are below the poverty line, the director of the establishment reveals to him. Henri-Louis’ mother takes the initiative to visit each of the families whose child attends school to identify their needs. Many are single parents. They do not have the means to have recourse to the private sector to fill in the gaps of the public.
The idea of creating the Little Kings Foundation was born; 21 years later, she helps more than 500 children and their families in the Montreal area.
New school, same desolation
Henri-Louis is growing up. In 2009, his journey continued at the Irénée-Lussier school, located not far from the Olympic Stadium. There too, the visit to the public establishment ill-suited to the needs of disabled teenagers brings tears to Mr.me Aguiar.
There are those stairs that are difficult to climb for students who have poor vision or who have major motor skills issues (there is no elevator). Classes are tiny. And those undersized door frames that get in the way when staff have to restrain a 6-foot/200-pound teen in crisis.
The former model rolls up her sleeves and decides to carry out an ambitious project: to convince the authorities of the need for a brand new school, fitted out for this clientele with special needs.
Cost of the project estimated at the time: 35 million (final cost: 77 million).
Vânia Aguiar becomes president of the school board, a position she will hold for nine years. So many years spent “sensitizing” elected officials and the ministers of education who will succeed one another. “Me, when the door is closed in my face – and it happened – I come back and I start knocking again until someone says yes,” she says, without losing her smile.
The new Irénée-Lussier school will finally open its doors in the fall of 2023. Too late for Henri-Louis. But his commitment goes beyond his son. “The cause sticks to my skin. It wakes me up at night. »
Over the years, she has known many “less fortunate” families than her own. “The arrival of a disabled child has united my couple, while it is more often the opposite,” she describes. My husband, my daughter, everyone is there for Henri-Louis. »
The black hole
At 21, young people with severe intellectual disabilities fall into a “black hole”. They are too old to attend a special school. And their case is considered too heavy for them to be able to integrate a day center or a work platform for the disabled.
It was before M.me Aguiar gets involved. His foundation has convinced companies such as Le Château, Cirque du Soleil, L’Oréal Canada and Loto-Québec to open work platforms.
When the project was born, 16 young people, including Henri-Louis, took part in a five-year internship at Loto-Québec. A specialized educator from the health network supervised them on site.
The most “heavy” cases were also entitled to an accompanying person – provided by the school service center. The “black hole” has become a well of light.
Next June, Henri-Louis’ cohort will graduate after five years of internship. The experience is so conclusive that the young people will work full time for the state corporation.
Go to an apartment
The biggest concern of Mr.me Aguiar? Her son’s future when she and her husband are gone.
“I go to see my doctor every year, and I tell him: I can’t die right away. Arrange for me to live long. »
Mme Aguiar visited intermediate resources. “I imagined Henri-Louis rocking himself all day in front of the TV,” she says, miming a rocking motion. I swore to myself that he would never live there. »
And it was there that she plunged into a colossal new project: financing the construction of a “smart house” where eight young people could live together without parental supervision. It was in 2017.
And guess what?
She managed to find the land and, above all, the necessary money. But the pandemic has played a bad trick on him, and the project is in jeopardy.
We meet her on the construction site located in the heart of the Côte-des-Neiges district. On a freezing day in December, workers are busy building the foundation.
The initial project was estimated at around 3 million – the federal government granted 2.25 million and the Fondation Les petits rois the rest.
However, as construction costs skyrocketed during the pandemic, they are now short 1.8 million.
Mme Aguiar tried to convince the feds to extend more money, without success. The federal government advised him to turn to the provincial government.
At the provincial level, it was suggested that he turn to the municipal level. “No elected official wanted to help us. They all shoveled the problem into each other’s backyards,” she adds, discouraged.
The Foundation nevertheless found an attentive ear in the vice-president of the executive committee at the City of Montreal, Benoit Dorais. The City authorized the start of construction, but demanded that its budget be closed by the end of January, explains Mr.me Aguiar.
Mme Aguiar recently wrote to Prime Minister François Legault to implore him to act “as a good father” to save the project. He refused to meet her, she learned just before Christmas. “Perhaps the cause of our vulnerable young people is not so important to him! I’m so disappointed. »
Standing in the construction trailer, dressed to the nines, Mme Aguiar shows us the plans for the house. “Young people will be fine here,” she says. A supervisor will live there permanently. Professionals will be hired so that young people can continue their learning. And technology can support them in their quest for autonomy. Large companies, seasoned architects, researchers from the University of Quebec at Trois-Rivières, the local CIUSSS and the Montreal Geriatrics Institute will collaborate on the project.
But what are you going to do if you don’t complete your budget by January 31? “We’ll find a solution,” she replies in the assured tone of a mother who has overcome adversity so many times.