“If my daughter Juliette weren’t here, I wouldn’t be the same person”

02 November 2023

“If my daughter Juliette weren’t here, I wouldn’t be the same person”

Boris Mayer-St-Onge is the father of three children. We talk to this professional involved in research and teaching at Université Laval about Juliette, 17, who has functional limitations, family life and a subject close to his heart: turning 18 for children with special needs.

Juliette et Boris Mayer-St-Onge

Boris, can you tell us a little about your family?

I’m the father of three children: my daughter Juliette, who will soon be 18, has a number of special needs. Loïc is 14 and Delphine has just started Secondary 1. At 12, she’s an incredible help to her sister. There’s a strong bond between the two sisters. Delphine does things she’s never been asked to do. Loïc and Delphine are growing up in a family that includes a child with special needs; I find this an enriching experience that gives them a different outlook on life. And of course, there’s my partner Brigitte Robichaud.

What’s the situation with Juliette?

During the pregnancy, the baby gained very little weight. We were closely monitored, but the doctors couldn’t find anything wrong. Everything was fine, including the amniocentesis. But from a very early age, the baby’s development was delayed. The genetic cause was found a few years later. The genetic problem was a chromosomal microdeletion.

While Juliette has no illness as such, she has several diagnoses linked to her disabilities: autism spectrum disorder, moderate intellectual disability, moderate to severe motor and verbal dyspraxia and ADHD.

But Juliette is always in a good mood, always smiling, always cheerful… She’s an incredible child!

What are the implications for your family’s day-to-day life?

Juliette has the cognitive level of a very young child. This involves a great deal of monitoring and taking care of her at every level, including hygiene, diet and social behaviour. As far as getting around is concerned, she does fine, being able to walk for short periods on surfaces that are not too uneven, and to climb steps. She’s talking more and more, but it takes some getting used to understand what she’s saying! Fine motor skills are difficult; she has trouble writing her name. So she needs constant attention. And Juliette has no problem sleeping, which is a relief for us!

Does she go to school?

Yes, since she was 4! At that age, every sphere of her development was affected, and she couldn’t speak. With Juliette’s severe language difficulties, we enrolled her in Joseph-Paquin school, where all the teachers use signed French: kindergarten 4 years before it was popular! So we took signed French classes to enable us to communicate with her and prevent her from withdrawing into herself.

This school caters to students aged 4 to 21. In these schools with specialized mandates, students don’t end up with a diploma, but are enrolled until the age of 21.

When Juliette turns 21, we’re going to have a lot of decisions to make. A challenge that other families face earlier. We need to distinguish between the end of a child’s schooling, which can sometimes come at the age of majority, and the completion of schooling. Soon, we’ll be looking at the transition from school to working life. We don’t yet know how this will pan out, but there will be a lot to do.

Do you have home care, respite care or other services?

At home, not at present. We had access to a program through the Association pour l’intégration sociale de Québec (AISQ), the regional counterpart of the Société québécoise pour la déficience intellectuelle. AISQ recently set up an in-home respite service provided by university and college students. It’s actually been great. But everything has to be planned in advance; twice a month, we have to fill out a form with our needs for the next two weeks for the care of Juliette or the three children. Short-notice respite, or just to pick Juliette up from school, is really more difficult to organize. I understand that it’s not easy for organizations to set up. Every year, we manage to get some weekend respite with other organizations.

I often hear about the ID-ASD-PD access desk for requests for services…

We have a social worker assigned to Juliette at the Capitale-Nationale access desk. Among other things, we work with her to set up a financial respite plan for summer camps and a few respite weekends a year. The program is called Répit aux proches aidants (RAPA). We’ve always managed to organize ourselves quite well with different organizations in the Quebec City area for weekend respite, notably with La Maison des Petites Lucioles and Autisme Québec.

Has Juliette’s situation made you question your ability as a father?

If Juliette weren’t here, I wouldn’t be the same person. I’d never been around children with special needs before. It was a new world for me, I wouldn’t have known how to interact and I would have been uncomfortable. With Juliette, her, the first few weeks were no different from any other baby. She wasn’t born with a big handicap, apart from her low weight. Then, with her limitations, we had to adapt, and everything happened gradually. I never questioned my abilities as a father. I’m an engineer by training, and I worked in research for 15 years before teaching. In engineering, when faced with a problem, you find a solution using the toolbox, the resources at your disposal and your creativity. I’ve applied this approach to my role as a parent of a special needs child.

In a l’Appui pour les proches aidants podcast, a mother says: "We’re the parent, we don’t see ourselves as caregivers. We don’t see that we’re going beyond our role as parents." How do you feel about this concept?

I totally agree with that, especially when the child is a minor and still in school. Juliette is still in school; I identify as her parent, even if she has special needs. The day she’s over 21 and no longer involved in the activities of young people her own age, that’s when I think I’ll also consider myself a caregiver.

What happens to these children with disabilities who are approaching 18?

Even if my daughter isn’t able to, governments consider that on the day she turns 18, she is capable of exercising all her civil, financial, legal and other rights, regardless of her diagnosis or disability.

As parents, we no longer have any legal rights over this person, who has become capable of exercising their own rights … without being able to do so because of their limitations. We then have to take many legal and financial steps, and deal with social services, in order to protect our family member and ourselves.

What’s the hardest part about Juliette turning 18?

The most complex element is setting up a protection plan. A doctor and a social worker have to make reports, and we’re asked a lot of questions about the child’s abilities.

For me, the transition to Juliette’s 18th birthday is an intellectual challenge: we establish the protection regime ourselves, without going through a notary or any legal assistance. Our case is simple, with no grey areas, our family is fine, there are no disputes and Juliette’s total and permanent incapacity is straightforward. It’s more work, but we’re learning so much in the process! However, there are still a lot of steps to take. Emotionally, it can be difficult because you have to appoint substitute guardians and set up a guardianship council.

ou’re planning to develop a website dedicated to special-needs children who reach the age of majority. Why is this?

We wanted to prepare for Juliette’s 18th birthday, and in particular to understand the financial impact of this transition. Family allowances, last-resort financial aid; Juliette has severe employment limitations.

I realized that for low-income families, the financial loss associated with their child coming of age can exceed $20,000. That’s a lot of money! Basically, you have to budget for turning 18. I searched the Internet, but couldn’t find any information. So I started collecting all kinds of information: social health, income, tax credits, protection plans, employment-service cheques… As I searched and searched, I thought: I can’t just leave all this information in my spreadsheet! It has to be shared! When I came up with the idea for the website, I went to specialized schools in the Quebec City area, offering to give presentations to parents and share the documentation I’d compiled. The first meeting alone included 75 registered participants! There’s clearly a need for this type of website.

The website will explain what’s at stake and propose a timeline with the various steps to be taken as a child approaches the age of majority. Some steps need to start as early as age 14, and there are many things to be managed between 17 and 18. I hope this website will be a great help and make a difference for families with children with special needs.

Thanks to Boris Mayer-St-Onge for his detailed answers and his precious time devoted to this conversation.

The website is currently under construction, and should be available in 2024.

For more information

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