The need for parents of children with intellectual disabilities to meet and find their way

For the past two years, a team of employees has been dedicated to providing support services to parents who live with or still care for their child who has an intellectual disability. L’Entraide has been in existence since 1963. In the beginning, parents got together to help each other. In recent years, there has been a need for these parents to meet and have services that are specifically tailored to their particular needs. That’s how this project came about, with the support of l’Appui pour les proches aidants.

I would say that parents who are caregivers of children with intellectual disabilities need to meet up with other caregivers and to find their way around.

First of all, they need to meet up with other caregivers, to listen to each other, to get along, to talk, to share their feelings, to unburden themselves. There is a kind of co-development that takes place between them. When they arrive in the parent groups, even if they don’t know each other, they recognize something in each other right away. The moment they sit down in the circle, without even having shared details about their situation, there is an immediate recognition among them of their history, their journey, the issues they face, the daily challenges… I get chills just talking about it!

Parents also have a huge need to navigate the multitude of procedures involved. So we offer multiple programs to address these issues: group support, individual psychosocial support with targeted assistance, support with procedures (income security, adapted transport, requests for accommodation for the child, preparing for the future), activities, coffee and conversation meetings, etc.

Caregiving generally has a beginning and an end. With intellectual disability, parents remain caregivers for their entire lives. With time comes exhaustion, fatigue and burnout. These parents have fought all their lives, often feeling alone, in the face of all kinds of small and large struggles: making arrangements, opening doors, seeking funding, obtaining services, getting support, receiving respite… They are in the thick of it, in a constant struggle to get what their family needs.

Yesterday, we had a group of four mothers. One of them, aged 76, lives with her 48-year-old son. She is exhausted: “When they ask me for $5 for adapted transport, I can’t take it anymore, I lose patience. I respond in a way that is inappropriate, only to regret it afterwards…” Exhaustion sets in. So, being told, “I'm going to give you a helping hand” is a huge relief.

Emmanuelle: Parents of children with intellectual disabilities have great resilience. They are not necessarily going to go knocking on every door and tend to “take care of it, because it’s my child”. Recognizing themselves as caregivers is a long process. They see themselves as parents first and foremost.

Elisabeth: Accepting as a parent that I need support in my role, that I will look after my child my whole life and that I don’t have the capacity to do everything… As a parent of a child with an intellectual disability, recognizing myself as a caregiver is a kind of taboo. Some parents also tell us about the unspoken within the family: “I talk about it with my loved ones, but I feel like I’m getting on their nerves. Nobody can understand what I’m going through. And nobody has ever offered to look after my child.”

The transition to adulthood for a child with an intellectual disability is a major ordeal and an unknown process. If they are not supported at this stage by the CISSS, it's difficult for many to know what's available to them and what they need to put in place. For example, it's not easy to know when and how to access social assistance for their children who have reached the age of majority. So L’Entraide works alongside the parent to support them in throughout their journey through this transitional stage of life. We have had extremely positive feedback from parents about this service.

Parents are invited, without their children, to a meeting where they can tell their life story through a collage activity. There is something valuable about sitting down by yourself, writing, drawing, gluing, and telling your story about your child, as if they were there. I think the collage activity allows people to mark significant moments in their life. Parents who are caregivers always go back to the beginning: the birth of their child, diagnosis, grief, loss, suffering. Revisiting these events is a way of healing and moving forward.

The gaping hole regarding children with intellectual disabilities after the age of 21 has changed a lot. Distraught parents would say, “We have no options!”

What do we do when school ends? In response to this, the school-to-work transition program (TEVA) was created in recent years, rewarding daytime activities have been set up and the importance of services offered by the community was increasingly recognized, particularly in Lanaudière. There was a huge void that needed to be addressed. We have also developed a work platform and a day centre with service agreements with the CISSS. About 140 people a week take part in our activities. In each MRC in Lanaudière, there are services for people with intellectual disabilities. Each one has its own program and activities.

You know, all of this is more than just a job. Elisabeth and I are sisters. Our parents adopted two children with Down’s syndrome. Our brother and sister regularly attend the activities of L’Entraide. What is important to me is the quality of the services. If it’s good enough for my brother and sister, then it’s good enough for everyone.

Yes, but it hasn’t been long! The programs used to focus on caregiving for the elderly. Whereas in terms of intellectual disability, people saw themselves as parents, not as caregivers.

Yes, but it hasn’t been for long! The programs focused on caregiving for the elderly. Whereas when it came to intellectual disability, people considered themselves as parents, not necessarily as caregivers. In recent years, the narrative has changed; we refer to things differently when talking about caregiving when it comes to parenting children with intellectual disabilities. Not everything falls on my shoulders as a parent: as a parent, it is my responsibility, and as a caregiver, I can get help.

Considering people with intellectual disabilities as a burden on society amounts to isolating family caregivers. The more society recognizes the contribution of people with intellectual disabilities, with their contribution completely different from our standards of performance and success, the more the role of caregivers is recognized with all its added value. In other words, when a collective value is placed on intellectual disability, resources are deployed to support caregivers.

• L’Entraide pour la déficience intellectuelle du Joliette Métropolitain inc.
• Soutien aux familles proches aidantes - Programmation
• Communicating with a person with an intellectual disability
• Being a parent caregiver
• Quebec Intellectual Disability Week
• Find resources

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