Four-year-old ÉliNoam has epilepsy and attention-deficit hyperactivity disorder. His specialists suspect he may also have an intellectual disability. His father, Jean-François Quessy, talks about keeping up with his son’s whirlwind personality.
Four-year-old Éli-Noam has epilepsy and attention-deficit hyperactivity disorder. His specialists suspect he may also have an intellectual disability. His father, Jean-François Quessy, talks about keeping up with his son’s whirlwind personality.
“Éli-Noam has a hard time following instructions, is completely fearless, and hardly ever talks, but he makes a lot of noise. You always know when he’s in the room, and he has trouble sitting still.
When he gets overexcited in public and starts climbing everything in sight, people sigh and give us exasperated looks. They think we lack authority and make it clear that we’re being a nuisance. But it’s no use scolding Éli-Noam or punishing him. He doesn’t understand because he hasn’t gotten there on a cognitive level.
In the beginning, the negative reactions we got from other people made my girlfriend and me sad. It doesn’t bother us as much now that we’ve learned to live with our son’s condition. At the same time, I still find it hard to believe that people can be so self-centred. That type of reaction is disheartening and makes me angry sometimes.
Despite everything, I think it’s important to avoid shutting ourselves off from the world. Getting out of the house is good for keeping our spirits up, getting Éli-Noam used to being in new surroundings, and getting others used to people who aren’t like them. But we also know where to draw the line. There are places and situations where it wouldn’t be appropriate for us to bring our son.
Overall, I get the sense that people are more open and compassionate than before. It could be the fact that we’re hearing more and more about kids with special needs. When I meet people who seem understanding, I like taking the time to answer their questions. As parents, we have the power to raise awareness in the community and to help people understand.
Things have also gotten better with the people close to us. They used to get anxious and stressed out whenever we came over with Éli-Noam, but they’ve learned how to deal with his disability, too.
People think we lack authority.
I have three goals with regard to my son: I want to make him happy, give him the tools he needs to become as independent as he can be, and make him feel there’s a place for him in society.”
Source : Naître et grandir magazine, May–June 2017
Interview by Nathalie Vallerand
Photo : Guillaume Roy