Things often take an informal turn when it comes to caregiver fathers…

27 September 2022

Things often take an informal turn when it comes to caregiver fathers…

Alexandre Legault is a specialized educator and a paternity worker at L’Étoile de Pacho, a support network for parents of disabled children. He is also a caregiver to his brother with Down syndrome. We spoke with him about the role of the male caregiver.

père d'un enfant handicapé

Can you tell us all about L’Étoile de Pacho?

L’Étoile de Pacho is an organization serving the greater Montréal area that was created by our director, Nathalie Richard. As the mother of a severely challenged child, Nathalie felt that more support was needed for parents of children who require significant care throughout their lives. Public services are overburdened and have difficulty responding to the many requests from these parents. For the past nine years, L’Étoile de Pacho counselors have been providing peer support to parents; the vast majority of staff are themselves parents of severely disabled or special needs children. Parents have access to a family support counselor and to matching services with trained childcare workers. Changing a diaper for a 12-year-old child requires certain know-how… Practitioners conduct research for families. There is an associative life programme with family activities, some for fathers and some for mothers only. There are discussion groups where parents can talk to each other, give each other advice and share tips and suggestions. It’s great for parents to have the support of people who share their reality.

What are the daily tasks of a paternity counselor at L’Étoile de Pacho?

When I first arrived, I was given the task of organizing discussion groups for dads. Before that, while some were involved in family activities, there were very few who joined in the discussion groups. I looked for the best approach and I realized that with fathers, things happen very informally. So I came up with the idea of organizing activities for and between dads. My role is to organize these activities (hiking, tennis, squash, beer tastings at a microbrewery, virtual activities) and to listen to what they have to say. I make sure things run smoothly, and I keep the discussion going during refreshments. I also offer personalized support to some fathers. I play a role in promoting fatherhood among the staff at L’Étoile de Pacho. To date, I am the only male employee in the organization.

What difficulties do fathers face?

Initially, the organization’s approach was very mother-centred, because many mothers take care of many aspects of their child’s life. How, then, do we adapt our approach to reach the fathers? How do we make the father feel included in our interventions? I am working with the Regroupement pour la valorisation de la paternité, which has helped us this year to adapt our interventions and the practices of L’Étoile de Pacho to the reality of fathers. A recent survey revealed that 50% of fathers feel that the services offered to families are not well adapted to their role as fathers. For example, when they go to healthcare appointments with the mother, it is the mother who is the main focus of healthcare staff. However, for the father to assume the role he is ready to assume, he must feel comfortable doing so.

We can read on the L’Étoile de Pacho website that, “Stress and exhaustion are constant threats for parents of disabled children.” Are there any specific stress-related issues for fathers?

Parental leave is mostly taken by women. At certain times, especially during the first years of a disabled child’s life, the need for care is considerable, there are numerous medical appointments, and it is often the mother who is responsible for dealing with them. Fathers have told me that it was when their child started daycare that they began to “experience what was going on” more. Before that, they saw themselves primarily as providers. Stress and exhaustion also exist among fathers, but may appear later, such as when it comes time to enter full-time daycare. The father then realizes that things are not going well and that help is required. Men are generally less in touch with their emotions, they are less likely to talk about and share them. In my discussions with fathers, I have learned that those who are not doing well will not necessarily reveal it.

How do these fathers express their plight? How do they say what is not going well?

Fathers are very vocal about the services that are or are not given to their child or to which they do not have access. They also express their needs to their employers for time off or adjustments to their working hours. In our conversations, I notice that the fathers also compare their skills with those of their spouses, who have already done a lot since the birth of the child. They ask themselves: “Am I capable of taking care of my child? Will my wife let me play the role I want to play?” Fatherhood itself is already quite a challenge, so when you add to that your child’s disability and the complexity of some of the care… Another aspect that has a significant impact on fathers is the choice of activities to do with their children. One father told me that he regretted not being able to play soccer with his son, even though it is an important sport for him. We all want to see our child do well in an activity. But theirs may not be able to. Mothers and fathers, while sharing the grief, challenges and realities of their child’s disability, experience them differently. Their roles also differ.

Do they feel stigmatized in their role as a father of a disabled child?

I think of family celebrations or activities. The houses of the family circle are not adapted, nor is the food. The family does not always understand the adaptations that are required. You can’t participate the same way in the same activities as others. Going to the beach, for example, involves a lot of organization! You have to protect yourself from the sun, the sand gets caught in the wheels of the wheelchair… Parents sometimes prefer not to take part in these kinds of activities, because they are already exhausted from their daily routine. I notice this in the workplace, for example, when an employer refuses to adjust the work schedule to allow the father to meet his child at the bus stop. So yes, these fathers are experiencing the effects of stigmatization.

It is often said that men like to get straight to the point and don’t want to bother those around them…

Since the beginning of the activities for fathers, I have been in contact with about twenty of them. So I can’t generalize. However, from our discussions, I can see that fathers need quick answers. Social workers and public services are short of hands; they are already doing a lot and cannot do more. At L’Étoile de Pacho, the staff provide quick answers; we communicate with each other for that. We are there to respond to the needs and questions of families.

The recent campaign of the Regroupement pour la valorisation de la paternité (Group for the Valuation of Fatherhood) emphasized the help that fathers need. There is a concern about valuing the request for help. Now, are men comfortable with that? There is a connection with the stigma we just talked about. I’m a father myself and I subscribe to several discussion groups on Facebook on the subject of parenthood and family organization. It’s almost exclusively mothers who participate. There is openness, but there is still a long way to go… When we ask for help from those around us, we often turn to women, because they are considered more likely to accept. All this is changing. For a father, asking for help remains a challenge.

At l’Appui pour les proches aidants, we use the term “parent caregivers.” How does this resonate in your professional practice?

For me, a caregiver is someone who does more than you would do for someone who is not losing their autonomy or in a disability situation. My older brother has Down syndrome with a moderate intellectual disability. He therefore requires special care and the presence of an adult at all times. For the past few years, I have been helping my mother with the care and supervision of my brother. This has led me to embrace the concept of caregiving myself. What I have noticed, in talking with my mother, with other parents of children with disabilities or special needs and with my colleagues, is that the notion of parent caregiver does not systematically come with the diagnosis. Parents see themselves as parents first. It is only later that they realize that they too have needs that are different from those of other parents who are not experiencing this reality.

Do you tell fathers that they are caregivers? What are the implications in terms of working with them?

No, I’ve never had a discussion along these lines with fathers. It’s true that using this notion of caregiver could make the person aware of their role and the help that exists for their well-being and that of their family. I think there is an advantage in recognizing oneself and being recognized as a caregiver. It encourages discussion and a certain openness: as a father, it’s OK to ask for help these days, because I’m emotionally overloaded, because I’m doing a lot given the situation and my child’s condition.

What advice would you give to a male caregiver to help him improve in his role?

To gather courage and dare to ask for help. People will accept his request. When you take the initiative, you are well received. With regard to services, perhaps the interventions are yet not entirely adapted to fathers everywhere, but that will come. I’m thinking of a form that’s been around for several years and to which a box has just been added to tick, that of “father”!

What qualities and strengths are associated with men in their role?

Sometimes being less emotional can help with making family decisions, to try things out, to trust, to be pragmatic, to go out and participate in this or that activity, to take a risk. That beach trip? Let’s do it, let’s go!

Has the inclusion of male caregivers had any impact on interventions with mothers?

Yes, a big thumbs up for the members and the team! Fathers are there, visible, and they participate! It creates a certain excitement. We continue to adapt our practices. I think that the interventions with the mothers have seen some changes, according to what counselors are saying. The mothers are happy. There is more room and time to include fathers. Supporting fathers is also helping mothers—and of course, families with two fathers or two mothers have to be considered too! Parents are a parenting team, and co-parenting is a concept that is both real and important.

What do you dream of realizing now for these male caregivers?

To have even more fathers present. In the long term, I would like to see fathers inviting each other and creating their own network, their own groups and discussion platforms. Yes, that would be my dream!

Interview by Karine Cloutier, Communications Project Manager at L’Appui pour les proches aidants. Many thanks to Alexandre for shedding light on this discussion!

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