'The myth is that the dad is the big, tough rock, the unfeeling one'
By Louise Kinross
Adrian Reid-Cowell is part of a blended family that includes his son Graeme, 9, who was born with mild cerebral palsy. Prior to meeting his new partner, Jess, Adrian parented as a single dad in a joint-custody agreement. In May, Graeme had a surgery intended to reduce his seizures. During the surgery, a weak blood vessel in his brain burst, causing a catastrophic brain injury. “He was reduced to a newborn, and had to relearn all his skills and basic functions,” Adrian says. For the last four months, Adrian has alternated weeks living with Graeme at Holland Bloorview with Graeme’s mother. One week on, one week back home to London, Ont., where he works as a registered massage therapist. We spoke about his experiences as a dad in a blended family supporting his son in hospital.
BLOOM: You and Graeme’s mother are no longer together. What kind of challenges does that pose when your child is hospitalized for rehab?
Adrian Reid-Cowell: I think there are some unique challenges, but first, there are similar challenges for any caregivers. How do we manage home life and Bloorview life? How do we support our kid in the hospital as well as the kids at home, and how do we keep working at home, and keep whatever else is going on outside the Bloorview bubble, going? We live in London, so it’s awkward and inconvenient to travel to Toronto. My work was awesome and very supportive, and my hours were downgraded below part-time. Financially, it’s very tough.
My ex and I have two kids and my partner brings a third kid in. So in January, we will have three kids in a blended home, going to three different schools. The logistics of getting everyone where they need to be with a single vehicle will be tricky.
We used to live in a regular, two-story conventional home, with the bedrooms upstairs. Graeme is in a wheelchair now, and we have no idea what the future holds. So we went looking to rent an accessible property, but we couldn’t find one that fit our unique needs—that fit within a regular family income, and where the landlords were okay having a disabled kid in the house.
BLOOM: What do you mean?
Adrian Reid-Cowell: When we asked if it was okay if we put a temporary ramp in, landlords would say yes. But then they’d decline our application—without giving a reason, and without checking credit or references. We eventually ended up figuring out we could buy a home that was already accessible—ours did need some modifications. We found, bought, closed and moved into the new home in less than four weeks, just as Graeme was starting at Holland Bloorview. So on my weeks in London, I was working, supporting the other kids, and helping Jess, who did the bulk of packing up the house, and then unpacking, while working full-time.
BLOOM: That sounds exhausting. Are there any strategies you’ve found useful to help you cope with the stress of having your child in hospital?
Adrian Reid-Cowell: There are some strategies that I’ve found successful. The first is: You don’t have to like the situation you’re in, it’s happening anyway. That’s useful because you acknowledge the situation, the challenge, the problem, and it gives you permission to move on from that, and not get stuck in resisting the situation.
It’s important to validate how you feel. There aren’t any wrong feelings. Recognize your feelings, and be okay with whether they’re good or bad. It can be very difficult to find an opportunity in a situation that feels ‘opportunity-less.’
There’s a misconception that you’re supposed to feel miserable all the time. You’re going through this ordeal and challenges, but it’s okay to have fun too. It’s okay to refill your own energy batteries. The term ‘self-care’ gets bantered around a lot, and everyone thinks they know what it is for everyone else, but it’s individual.
Figure out what makes you feel better, or what makes you feel less crappy. Sometimes, feeling better won’t work today.
Get your nails done, go to a movie, or play a video game. Do the opposite of self-wallowing and pity.
BLOOM: I know you’ve attended the parent yoga here. Did you find that helpful?
Adrian Reid-Cowell: Yes. I enjoyed stretching out and being with people who have similar experiences, who aren’t going to give you the pity face. We’re all pretty much done with the pity face!
Dark humour is okay too.
It’s important to remember to go easy on yourself, and cut yourself some slack. We reset the expectations for our loved ones who are here in rehab, and for our partners and other children. But it seems to be a hang-up we have, as caregivers, where we think we have to be these stoic pillars of strength. And it’s perfectly okay not to be a stoic pillar of strength. Give yourself permission to be off your game.
BLOOM: What might that look like?
Adrian Reid-Cowell: Tomorrow I’m going to have fruit loops with chocolate milk for breakfast. That’s something I don’t do in London. It’s kind of goofy and ridiculous and fun and I’m going to give myself permission. People look at you and don’t expect you to smile and be jovial, but I get to be happy too. In the end, I’m responsible for myself. If I can let everyone else reset their parameters, I can do that for myself too.
BLOOM: You had an experience here where you felt excluded as a dad. Can you explain?
Adrian Reid-Cowell: I went to an education workshop for caregivers of children with brain injury. All of the speakers were moms whose children had gone through Bloorview. Everything was framed as ‘It’s tough as a mom of a kid with this.’ When I think of a caregiver, I don’t picture myself, I picture women, so I wasn’t annoyed at first.
But after a while I turned to Jess and said ‘They do realize there’s a guy sitting here.’ At the break, she mentioned that it’s 2019, and it’s not just moms that do this. We should stop saying moms, because dads do it, too. They did change the language they used after that, and later, another dad came to the workshop.
BLOOM: Do you think it would be better to have had equal representation of moms and dads as presenters?
Adrian Reid-Cowell: I did apply to become a family mentor so that I can participate in the future. I don’t think it needs to be half and half. I think if the language it changed to caregiver, so it’s not focused on gender—that works well. I don’t think the actual experience of giving the care changes, whether I’m Graeme’s dad, mom, or step-mom, or a grandma or grandpa or aunt. It’s not gender-specific.
BLOOM: As a dad, what’s been the biggest challenge for you while Graeme is in rehab?
Adrian Reid-Cowell: Very early on, I wanted to handle a bathing situation for Graeme one way, and the nurse said ‘That’s not how mom and I did it.’ I was very taken aback. That invalidated me as a caregiver. That was tough. I was not ready for it. I rationalized through the situation and explained that I wish to do it this way because of this, this and this. The nurse clearly wasn’t happy with the decision, but went along.
Parents are different people, and they parent differently, and we need to respect differences in parenting.
We need to remind staff that we’re working within a system that’s less familiar with working with dads.
BLOOM: What supports at Holland Bloorview have you found helpful?
Adrian Reid-Cowell: When I need help, I ask for help. I go to the people on Graeme’s team, like Caron Gan, who is the family therapist. If I need to create space and time for me, I go to the Thursday inpatient caregiver workshop from 1 to 2 p.m. It’s one of the best for caregivers. They have a topic every week, and this week’s was school integration and going back to school. They’ve also done topics on brain injury. One was about how if your kid is behaving in a way you don’t appreciate, remember that quite possibly it’s because of the brain injury. By thinking brain injury first, it de-escalates you, so you can de-escalate the situation. The aspects about self-regulation that are discussed in the workshops are important reminders.
Over time you get to know the other caregivers, and when you realize you live in the same city, or have a similar challenge, it creates a dialogue, and you get this cohesive support group.
BLOOM: How could health professionals improve the way they work with dads?
Adrian Reid-Cowell: Something to consider is that it's not seen as socially acceptable for us to feel, to break down, and to be the emotional bedrock for a child in this situation.
They myth is that the dad is the big, tough rock, the unfeeling one. There’s a pressure to be that male model of stoicism. As a male caregiver, it's important to give yourself permission to express your emotions, and not to worry about what everybody else is going to think. As a single dad, I had to show my boys that it was okay to cry, it was okay to be emotional, and it was okay to have a bad day.
The worst thing you can do in this situation is to bottle your feelings up.
