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Family First
Marie-Josée Taillefer and René Simard’s children are both deaf, so the family has seen a lot of healthcare professionals over the years. The couple has agreed to talk to us about their journey and experiences.
How did you find out about your children’s deafness?
René: For Olivier, I started to wonder when he was around 5 months old. I realized I couldn’t comfort him with the sound of my voice. If I went to check on him in the middle of the night but didn’t turn on the light, he wouldn’t calm down from my voice alone. I’m fairly anxious by nature and I felt like something wasn’t right, but I didn’t want to worry Marie-Josée by saying anything. Eventually, we did go to the Sainte-Justine Hospital for testing, and that’s when we learned he was profoundly deaf. As for Rosalie, she was diagnosed at birth.
Marie-Josée: I would add that when Olivier was 6 months old, he had a regular well-baby checkup. The doctor checked his ears and everything seemed fine. There was nothing special to report. However, we still had some doubts, so we started doing tests at home. We’d drop things on the ground or stomp around to see if he could hear us. Problem was, sometimes he’d react, sometimes he wouldn’t. Either he was feeling the vibrations or it was just pure chance. Deafness can be really hard to detect. Olivier he’s profoundly deaf and it still took us several months to figure it out. Imagine what it’s like with milder hearing loss.
What was the process like from the time you discovered your children were deaf to the time they received their cochlear implants?
René: They wore hearing aids until they got their cochlear implants. We started researching cochlear implants because at a certain point, we realized hearing aids weren’t helping the children anymore. We also started learning sign language around that time. It was the first way we could communicate with them.
Marie-Josée: When we started learning Quebec Sign Language, so did a lot of our family. That way we could practice with each other. My mother was sure she’d learn all of the signs quickly, but it’s not that easy! You might think that the signs always have something to do with the word, but that’s not the case. Sometimes the signs don’t make sense. It’s quite a learning process.
René: And you might think it’s a universal language, but it’s not! LSQ is a mixture of a number of different sign languages.
The cochlear implant was a fairly new technology at the time. Did you have any concerns about that?
René: Naturally, we had concerns, since it was a new thing and nobody knew much about it. But as parents, we wanted to give our children nothing but the best, so it was something that really interested us. Then we met Dr. Pierre Ferron, who really put our minds at ease. At the time, the RAMQ didn’t cover cochlear implants. That didn’t make any sense to us, so later we worked with Dr. Ferron and Francine Carmichael, president of the Fondation du Québec pour la recherche sur l'implant cochléaire, to put together a file for the Ministry of Health. Finally, funds were allocated to eliminate the waiting list and have the cochlear implant covered by the RAMQ. It was a huge victory for us!
Marie-Josée: The waiting list was two years long at the time. That’s an extremely long time for a child, since childhood is when we develop our language learning. If a child can’t hear anything for months, let alone years, that severely delays their language learning. You can’t really make up for the lost time. We are proud to see that after all our hard work, the waiting list has disappeared. Children no longer have to wait, and it’s a huge benefit to their development.
Helping your children with language learning must have been quite the challenge!
Marie-Josée: Really, language learning began long before the cochlear implants. Olivier got his hearing aids at 11 months and Rosalie got hers at 2½ months, and we started doing exercises right away. Then we never really stopped. The cochlear implant just became part of the process. That said, we had to start the process all over again after the implants because the children’s hearing had changed so much.
René: After the cochlear implant, there’s still a lot of work to do. Children need to be taught how to hear sounds and distinguish between them. That takes a lot of work. Eventually, though, we were able to drop the sign language.
Over the years, have there been encounters with healthcare professionals that have made an impression on you?
René: Dr. Ferron really left an impression with his knowledge and empathy. He really helped guide us through the whole process. Then there’s all the speech-language pathologists, audiologists, audioprosthetists and specialized educators we’ve met—and there have been many!
Marie-Josée: I would add that all the teachers were also extraordinary with Olivier and Rosalie. The same goes for Mrs. Catherine Bossé of the Montreal Oral School for the Deaf whose meeting was decisive in the early days with our children. We were extremely lucky, because we had some great encounters and all these people had the development of our children at heart. Their dedication was essential because the situation required a lot of collaboration. For all these reasons, several years later, we became very involved in making known the Fondation Sourdine which supports the École oraliste de Québec pour enfants malentendants ou sourds. This is our way of telling parents who are faced with this situation that they are not alone.
Today, in retrospect, what advice would you have for parents who learn that their children will have to live with deafness?
René: I’d like to tell them that it’s not the end of the world. It’s something you just need to learn how to accept. Yes, you can grieve, but it’s important to keep looking forward for the children’s sake. Also, as a couple, it brought us together and helped us grow. It’s strengthened our bond with our children, too—our relationship is probably better than it would have been otherwise. We talk to each other every day. We’re really close. Instead of making the deafness our enemy, we made it our friend. It’s also made us realize how lucky we are to have all of our senses.
Marie-Josée: Also, it’s important to do your research. I remember going to the library to try and find some reading material on deafness. That’s how inaccessible it was 30 years ago. But I think the best advice I can give is to trust yourself. It’s important to do the work, take charge of the situation, and ask questions, but also to trust that you’re the one who knows your child best. From there, you can move on and celebrate all the little victories.
Thank you Marie-Josée and René for taking the time to share your journey with us. You’re such an inspiration and your pride in your children is beautiful to see!