Interview with Guylaine Guay

You said that you wanted to talk to us about the role of mothers in 2018. What place does this role occupy in your life?

I would say that I’m a woman, first and foremost, and a mother second. I know that this may sound surprising; we’re not used to hearing a mother putting her role second but it’s my philosophy that if Guylaine isn’t doing well, if she’s not happy, then she won’t be able to make her children happy.

Therefore, I make sure that I take time for myself without feeling guilty, when I need it. My family knows I’m there for them but that I also need alone time and silence. And it suits everyone very well. I think that when we explain these things, when we name them, those close to us understand and accept them.

Tell us about your two boys, Léo and Clovis.

My eldest son, Léo, is almost 18 and my youngest is almost 16. They are both living with autism spectrum disorder. Léo is verbal, more functional and Clovis is nonverbal. He understands everything and communicates with his entire being but doesn’t speak.

Clovis got his diagnosis first. He was 3 and showed more apparent signs of autism, he walked on tiptoes, didn’t look us in the eye and didn’t speak. Needless to say, it was a shock. There was still very little information about autism at the time. People hardly talked about it. I had to do a lot of research on my own.

Years later, Léo was also diagnosed. His diagnosis didn’t come as a surprise to us, but rather as a relief, knowing what you’re facing makes things much easier. It allowed him to have access to the schools and services he needed. It’s very comforting for a parent to know that their child is in good hands. Unfortunately, not everyone gets that chance.

What were your more precious tools to face your children’s special needs?

When I got pregnant with my first child, I was living in Nuvanut I was on the pill… His arrival was such a surprise that I saw it as a sign! I had never intended on having children, so I had never dreamt of the perfect child. Therefore, I didn’t have to mourn that lost and I was able to accept my sons as they were. Accepting the diagnosis helped me a lot. I took on that challenge one day at a time without letting the fear of the unknown overwhelm to me.

I also owe a great deal to my natural ability to accept differences; at home, perfection and social pressure don’t exist. I have no interest in what other people think or in competition. Finally, openly discussing the condition with others helps tremendously. Talking opens hearts and minds.

Tell us about the Véro & Louis Foundation of which you are the sponsor and to which you decided to donate a $1 per Act Beautiful Beauty Box sold.

It’s a magical story! In 2014, I wrote a book, Deux garçons à la mère, which told the story of my daily life with my sons. In a chapter about their future I wrote this short sentence: "I dream of a big house filled with love and I know someone who’s very generous will read this line''  Véronique Cloutier read it and got in touch with me.

A year and a half later, the Foundation was born, with the mission of building and managing houses adapted to adults aged 21 years old and older living with autism spectrum disorder. From this age onwards, people with autism are no longer supported by the public system and a number of them, like my son Clovis, will always be in need of assistance on a daily basis as well as an environment designed to provide them with comfort and safety. The Véro & Louis houses will be able to accommodate them in the long term. When he turns 21, Clovis will be able to go live in one of the houses and stay there for life.

It’s an entirely new model that we hope will be replicated throughout Quebec. The construction of the first house has started and it is located on beautiful grounds in Varennes. What touches me the most about this project is that it re-establishes the rightful place of difference. We’re telling people who are different that they too have a right to new and beautiful things. To a happy life. This house gives me peace of mind, and I hope to help as many parents as possible get it as well.

Lastly, what advice would you give the parents of children living with autism spectrum disorder?

Even though, everyday life isn’t always easy, don’t be ashamed of your children. Be proud of their difference.