Sylvie became pregnant at age 30. She had a peaceful pregnancy, a loving husband, and a head full of dreams. On June 6th, 1996, Alexia was born: a lovely little girl with brown hair and brown eyes. “A beautiful baby,” as they say.
By Sylvie Daneau
But as the days and months passed, Alexia only cried and cried. Even if Sylvie tried to console her, and to understand what was going on, nothing seemed to work.
Sylvie soon understood that something was wrong with her baby. “As a mother, you just know, and I could see that Alexia wasn’t well.” Her entourage also started asking questions. Some thought there was something strange in the baby’s look, something rare.
Sylvie went to the hospital several times to consult with pediatricians. Everyone told her not to worry, that it was normal that a baby should cry all the time. But Sylvie wouldn’t let go.
After several visits, the doctors decided to put Alexia through a battery of tests to understand what might be wrong. Throughout all this, Alexia made no effort to communicate. She didn’t talk, didn’t understand her first name, walked in circles and hated to be touched. “It’s a tough feeling to experience,” Sylvie says, “to see your child fall and not be able to take her in your arms. For me, it was a failure for me as a mother.”
It was only at the age of 2 years and 8 months that the doctors made their diagnosis: Alexia suffered from hyperactivity, autism and a severe intellectual disability. They would have to wait for ten years before Alexia could be properly treated.
During this time, they tried a few therapies: first with smells, to teach her how to swallow; then, with pictograms, to get her to understand what an idea was. Given that Alexia couldn’t speak, they had to find a way to communicate. It was the images that broke the ice, her mother says: “She reacted to images very well. I’d show her a bus, and she knew that that’s what took her to school. But I didn’t think drawings were realistic enough, so I showed her photos. For example, when I showed her a photo of the Saint-Hubert logo, she knew we were going to eat chicken.”
Alecia is a big eater, her mother confides. “They tell me it’s rare for an autistic person to love eating. Alexia adores it. So I said to myself we’ll try to use another system, a system of rewards.” That’s how Sylvie got closer to her daughter. Eventually she was able to take her daughter in her arms and hug her.
The Impact on the Parents
At the same time, the relationship between Alexia and her father withered. Alexia required a lot of attention, and her two parents didn’t get a lot of rest. That’s how they came to ask for a bit of a break. To start with, someone came over one weekend a month to take care of Alexia at the house; then, once every two weekends; then, two hours a day. “I didn’t think that person could really help us,” says Sylvie. “Everything revolved around Alexia, and I didn’t know what to do. But eventually I grew to like it. I could go out, do the grocery shopping… Lots of things I barely did at all.”
Despite all the goodwill in the world, Sylvie and her husband decided to separate. “We organized joint custody. One week each, but with a day off in the middle, because it’s psychologically and physically too much.”
Sylvie had a full schedule, including a full-time job. “I saw my separation as a failure, and the fact that my daughter wouldn’t let me touch her made me feel unworthy and undervalued. It was indispensable for me to keep my job… Even if I was at the end of my rope, even if all the fatigue made me a little gaga, I told myself that I’d never give up my daughter. I saw that as another failure, I didn’t want anyone to feel pity for me… But I came to the realization that my role as a parent wasn’t destroying me, but rather, that it was too much for me.”
During this period, Sylvie found a new man. Love got her back on track. “It was a man who loved me and my daughter. With his love, he swept me away. Even if it’s over now between us, I have to say that he calmed me down a lot through the storm.”
When Alexia turned 9, Sylvie made the decision to place her daughter in foster care. “That was the most difficult thing to do and to experience,” she says.
Alexia was looked after by several people, including Marjolaine of the Briand Residence. “She cherished her as if she was her own daughter. I said to myself that finally, I could lead a normal life,” Sylvie confides.
But Majrolaine fell sick and could no longer care for Alexia. Sylvie found a new foster home for her at Angèle’s home. “My angel,” as Sylvie refers to her. Alexia also attended finished the Alphonse Desjardins special school for three years. It accepts students between the ages of 13 and 21 who suffer from middling to serious intellectual deficiencies, with or without autism spectrum disorder.
“The team was wonderful, full of love for their students. As a mother, even if I see things from a different, closer vantage point, I’m happy to see that the personnel can create bonds because I thought that would be impossible.”
For their end-of-year party, Alexia wore a beautiful black dress with glittering shoes. “She was flipping over the glitter on her shoes. Even though she’s autistic with an intellectual handicap, she has feelings. That night, I saw her smiling and happy… She couldn’t stop dancing. We had to pull her off the dance floor!” her mother laughs.
As Sylvie looks back at the 21 years spent with Alexia, it’s with a lot of tenderness that she confides: “Sometimes I feel pain, because Alexia has never said ‘I love you’ like every girl says to her mother. But she’s said it to me in other ways… With her eyes. That’s what’s warmed my heart.”
Now that school is over, Sylvie has other worries, like any mother would. With her new partner, who loves Alexia as if she was his own daughter, both want to find her a new environment so that she can continue to blossom and flourish. “When she was at school I wasn’t worried anymore, because that’s a milieu made for her, to socialize. But we don’t have the means to pay for a new school, and we’ll have to get organized on that front. But with Alexia, I’ve learned to live life one day at a time, because there will always be solutions at any given moment.”