By Louise Kinross
When I first saw the title of Ann Douglas's new book, Happy Parents, Happy Kids, I was a bit skeptical. I wasn't sure if it was too simple a premise to apply to the unique challenges of parenting kids with disabilities or chronic health problems.
But in Happy Parents, Happy Kids, Ann argues that many of the pressures facing parents today can't be relieved one family at a time. That's why broad changes are needed at a cultural and policy level to create the kind of wrap-around supports that enable all parents and children to thrive. We talked about why so many parents today feel so inadequate, no matter what they do.
BLOOM: In 2015 we spoke about your book Parenting Through The Storm—which focused on parents raising children with neurodevelopmental disabilities and mental health issues. What inspired you to write another book?
Ann Douglas: I thought a lot of the messages conveyed in Parenting Through The Storm needed to land with a broader audience of every parent. It’s not just parents of kids who are struggling who need to think about self-compassion, self-care and community. Every parent is at risk of feeling isolated and burnt out and self-critical.
BLOOM: What kind of parents did you interview in your new book?
Ann Douglas: I tried to go for a diverse group of parents. I have people from every kind of income level, and different situations, family structures and challenges. The book includes insights from the parents of a child who is living with a rare disorder that makes the future a wildcard. It includes the story of a mom who is living with stage four cancer. And it features comments from a mom who is juggling five part-time jobs, and who is completely fed up with pat answers and simple solutions.
I deliberately asked the technical reviewers of the book to look at inclusiveness and equity. For example, at one point in the book I’d written about doing batch cooking on the weekend, and one of the tech reviewers pointed out “If you can barely afford the groceries for one meal, you can’t afford to do batch cooking.’ I wanted to make sure we weren’t just talking about people in traditional, predictable 9 to 5 jobs, when the new normal for many families is contract and more precarious work.
BLOOM: I heard you speak recently, and you said many parents who were really interested in the idea for your new book then declined to be interviewed for it. Did that surprise you?
Ann Douglas: It did, because I’ve been writing about parenting for a long time, and I’d never felt that level of fear, particularly here in Canada. It seemed that all parents had a sense that they were parenting wrong. There was a lot of worry about judgment from others. They felt they might not be the best parent to be interviewed about this stuff. There’s been a lot of anxiety happening in the broader parenting culture. Parents are anxious about the world they’re raising kids in today, and what it’s going to be like when their kids are old enough to establish their own lives. They’re anxious about so many things.
Locally, in Ontario, we’ve seen parents speaking out about the changes to autism services, and the cuts to education funding. And it's not just parents of children who are directly affected who are feeling this anxiety. Parents worry that the same thing could happen to a program that affects their child, or perhaps to a more universal program that’s available to all families.
Parents feel like they’re being asked to shoulder so much responsibility, and they’re worried that the rules of the game have changed. Maybe you can’t get the job that allows you to pay the bills. Maybe you’re piecing together a whole bunch of precarious and unpredictable jobs and wages.
Parents are thinking ‘I can hardly do this now, what happens if things get worse?’ Anxiety is a perfectly logical reaction to the state of the world today, and we need to stop blaming parents for being so anxious, and give them less to be anxious about. We all need to link arms and say ‘It’s not right that anyone is losing out on what their child needs to thrive.’
BLOOM: What other factors make parenting feel particularly hard these days?
Ann Douglas: In order to pay the bills, in most families you need to have both parents working full-time, and a lack of work-life balance is a huge issue.
A lot of research shows it’s at the heart of what makes parents feel guilty and inadequate on a personal level. Parents think if they just try harder, they could figure out a way to have the energy to be working full time, and at the same time to be parenting to an increasingly high standard. People feel massively overloaded and guilty. A parent named Elaine in my book said it doesn’t matter where she is, or who she’s with, she feels she’s letting someone down at work or home.
BLOOM: What in your new book will resonate with parents of children with disabilities?
Ann Douglas: I think what’s different about this book is that it’s a much more political book. Parenting Through The Storm was rooted in personal stories and what you can do at an individual family level, and the need to have peer support and community. The new book is about grabbing your community and your picket signs and demanding a better world for kids and parents.
BLOOM: So the problems we’re facing aren’t ones we can necessarily solve alone?
Ann Douglas: No. One of the parents I interview in the new book said systemic problems require systemic solutions. Otherwise, we feel it’s an individual failing when we can’t make it all work. But how can we make it all work?
How can we solve problems like climate change or create universal child care in our spare time? Then, when a parent is dealing with something extra, like a child’s disability, you can turn up the dial by 10,000 per cent.
BLOOM: You talk about the importance of parents remaining calm.
Ann Douglas: First, it’s important for our own parenting. Unless you can hit the pause button and consider what’s working, or not working, with your child, you can’t pivot and figure out the best way to move forward. It’s also important to provide an atmosphere where kids feel reassured that as parents we’ve got it—we’re going to take care of them, and they don’t have to worry about parenting us.
I’m someone who has to work really hard at staying calm. It’s not my natural state, and I recognize that a lot of people are wired this way. We should probably say it’s important to stay 'calmer,' not calm, even if it’s just at the start or the end of the day. We don’t need to be intensively doing meditation for hours on end! That’s never been the reality of my life, and it won’t be for most people.
BLOOM: How can we be calm when we’re dealing with the uncertainty of a child with chronic illness or complex problems?
Ann Douglas: One thing you can do is find a safe person who can help you to carry the emotional load. There’s an awful lot of administrative work and letter writing when your child is struggling. The next time your child is suspended, maybe you can get a friend to write that letter to the school. Every letter doesn’t have to be written by the parent. Maybe another caring family member or a friend could write it. Maybe instead of feeling that you have to read all of these websites to find out what your child qualifies for, you can tap into a pool of people who’ve already done that reading, so you don’t have to start from scratch.
BLOOM: So a group online for parents of kids with disabilities?
Ann Douglas: Yes. We’re also talking more in society now about the idea of being an ally to somebody. So who do I know in my circle who might be good at writing letters? Who is a chatterbox and would love to make a bunch of phone calls to ask questions of service providers?
Over the weekend I received a message from a friend asking me to write a letter to encourage politicians in a nearby small town to reconsider their longstanding policy of never flying the pride flag. I was so happy he made that ask. I spent half an hour writing a letter I was proud of—a letter that talked about how important it is for every citizen of, and visitor to, that small town to feel welcome and included. Too often, we have a misguided notion that it’s wrong to ask other people for a favour, and we forget the times we’ve been able to do someone a favour, and how great it feels.
BLOOM: One of your chapters is about guilt. I know parents of kids who are born with disabilities may feel guilty because we couldn’t prevent our child from having extra challenges.
Ann Douglas: We need to look at the difference between situations that are, or aren’t, within our control, and be clear where these things fall. In most cases, none of us would consciously choose to make life harder for our kids. With genetics and the environment it’s a bit of the spin of the roulette wheel for all of us.
We also need to think about guilt in terms of the expectations we place on ourselves. I often hear from parents of kids with special needs who feel they’re doing it wrong, because they’re exhausted, or not joyous or endlessly positive. When you’re burning out, how can you feel joyful and energized? We have to be realistic, and not add an additional layer of ‘I have to be endlessly positive’ on top of what is already a massive and unsustainable load.
BLOOM: I’ve found the messages from Kristin Neff’s books on self-compassion helpful.
Ann Douglas: The biggest thing I’ve taken from her work is to reframe what we tell ourselves by asking ‘Would I say this to a friend?' If a friend told me ‘I’m the worst parent in the world,’ what would I say? Then try to say those kind things you would tell a friend to yourself.
BLOOM: You argue that parents and kids need a village of support around them. Sometimes it's hard for parents of kids with disabilities to find that support, or build it.
Ann Douglas: At a lot of my presentations, parents are telling me that they feel isolated and cut off. Given that so many of us are massively overloaded with work and other commitments, it’s not surprising. But sometimes people get this idea that to have a village you have to have 40 people around you. The village could be two to three people. It doesn’t have to be huge to be strong.
Sadora Asafaw has worked as a special-needs coordinator in Holland Bloorview's Spiral Garden and as a recreation assistant running programs for the hospital's inpatients. She recently defended her master’s thesis in Environmental Studies at York University: Amplifying the Experiences of Black Youth with Developmental Disabilities and Their Families: At the Margins of Policy and Practice. Sadora did in-person interviews with eight members of four families. The youth with intellectual disability had autism or, in one case, a rare genetic condition. “Racism, socioeconomic status, ableism and gendered inequities produce institutional and systemic barriers that affect the care pathways of black youth and their families,” she writes in the conclusion of her study. We spoke about it.
BLOOM: What was the goal of your study?
Sadora Asafaw: To really hear the experiences of black youth with developmental disabilities and their families. In my research, when working at Holland Bloorview, and in looking at other community organizations, there is very little documented about the experiences of these families.
BLOOM: What do we need to know about the results?
Sadora Asafaw: How intersectional, or interconnected, some of their challenges are. So, for example, financial strain for families of children with disabilities isn’t a surprise. But in my research I learned that black people in Canada earn 75.6 cents on the dollar that non-racialized Canadians earn. I expected the financial strain of disability, but we rarely consider how these families have higher rates of poverty based on racism.
BLOOM: So it’s a double financial whammy.
Sadora Asafaw: For any family raising a child with disabilities, if you have money, you can try to offset some of those challenges. Money helps in your ability to cope with challenges and ease the strain. These families are marginalized by poverty based on racism, in addition to the extra costs of raising a child with disabilities. But I wasn’t able to find anything that looked at both in Canada—that disaggregated families with children with disabilities based on race. Organizations have just started to collect data like that to take a health equity approach.
BLOOM: Another finding was that most services for these families are located in higher-income areas, so not in the families’ own communities.
Sadora Asafaw: That is absolutely true. The families have to travel great distances, and it’s hard if they don’t drive. But another issue related to where the services are located is how these families manage challenging behaviours in their children as they get older and bigger. Almost all of the families told me they had been pushed out of a program in a higher-income neighbourhood, or were no longer welcome, because of their child’s behaviour when they became teens.
When their kids were a lot younger, they looked cute and organizations could accommodate them and their meltdowns. But as they got older, staff reacted with fear to meltdowns. When the youth grew to be six feet tall and black, they felt threatened by his behaviour. Some black families also felt that the policies of the organization were applied more harshly to them, and that staff responses were shaped by racist stereotypes of black males as threatening.
There was also a sense—in programs or at school or even in hospitals—that when a black parent was advocating on their son or daughter’s behalf, staff would tend to doubt or question whether the youth’s behaviour was part of their disability or they were acting out.
BLOOM: I know you also found families felt that their youth with developmental disability didn’t receive the best health care.
Sadora Asafaw: Yes. They explained how their child’s disability resulted in them not getting preventative care, where doctors would help identify potential areas of concern that needed to be worked on, as opposed to acute care. This fit with my research, where I learned that families of youth with disabilities—especially intellectual disabilities—are less likely to get preventative healthcare and health promotion.
BLOOM: There was an interesting quote in your study from a sibling who said her brother was very overweight and developed other symptoms and when the family pressed for answers, they were told he had probably had diabetes for some time and was in crisis.
Sadora Asafaw: When you add race and low income to the mix, preventative care is less likely to happen. If that family were high income and living in a community where they get preventative care, can afford many activities and are more aware of what to look for, it would probably be caught earlier on.
BLOOM: So there often isn’t proper monitoring of these youth for secondary health problems?
Sadora Asafaw: It’s not just monitoring. If a family is told they have to change their eating habits, and they’re living on a low income, what if they can’t afford fruits and vegetables? Or what if the youth throws away food because of texture, but the family can’t afford to pay a behaviour therapist for help, and there’s no community health centre to support the family’s needs? Health promotion may also look different for these families, or require more steps.
BLOOM: I know you talked about the cost and location of programs that were barriers.
Sadora Asafaw: I saw two things. Sometimes there’s an information dump about available services that leaves families feeling overwhelmed. They don’t know what to seek out, or how it may apply to their child.
On the other hand, sometimes workers recommend things that are so incredibly far from where the families live. If you’re working two to three jobs, and the program is on the other side of the city, and you have no transportation, how will you get there? Or families may not know that to get a spot in the summer, they have to register in the winter, so when they call, the program is full.
Enhanced care coordination alone is not going to address the challenges black families experience. We have to understand how intersectional these barriers are: the financial strain, and how that determines where you live, and where you live positions whether you can attend certain programs, and whether you can attend quality programs. We have to understand how a child’s challenging behaviour, and how it may be perceived as a threat, contributes to that family’s experience of isolation and lack of support. We’re talking about racism. And if we’re not confronting that in our policies and programs and practices, these systemic and institutional injustices will persist.
BLOOM: So you’re talking about how these families are marginalized in multiple ways, and how different kinds of discrimination stack up.
Sadora Asafaw: Yes. And if clinicians don’t hear about this from families, it may be because English is a second language for parents. Or maybe they’re from Canada and they’re afraid of encounters with doctors or teachers or other persons of authority. They don’t feel safe to voice their concerns through traditional reporting methods. They know that part of an organization’s protocol for their child’s escalating behaviour is to call the police. Writing a complaint doesn’t work for these families because it leaves them feeling more vulnerable to being penalized.
BLOOM: Something that really stood out for me in your study was when a mother talked about how she’d rather her son beat her up than call 911 for help, because police would treat him like a criminal. “They would handcuff my boy…make him freak out all the more and then because they’re going to go and take the situation out of my hands, because they’re probably gonna [say] ‘Well, you called us!...’ He doesn’t have language to speak and unless I know what cop is coming to my door…Nope! Not gonna go there.”
Sadora Asafaw: I hear about situations like that a lot. CBC just released a report that looked at deadly encounters and how black people are more likely than any other racial group to be a victim. But no one has dug deep to look at how this informs these families’ care pathways. You see how black, indigenous and other people of colour continue to be left out. We have to address all kinds of marginalization for these families when developing and promoting programs.
The South Asian Autism Awareness Centre has done some incredible and important work, but they’re doing it with very little funding and great demands. Families go there because they trust them and they’re able to meet people in their community.
BLOOM: So you’re talking about targeting care to different communities?
Sadora Asafaw: First we need to hear from those communities and understand what’s not working. Maybe we can work with local organizations that are culturally based. Sometimes faith plays a big role, so perhaps working with local churches or mosques or other sources of support. If service providers aren’t hearing from black families and aren’t seeing them in their programs and services, you have to ask why? What is a barrier? What leads these families not to feel comfortable?
We need to do more outreach to families that aren’t engaged. You know that saying in the disability community ‘Nothing about us without us?’ It applies to black folks and other indigenous populations. It’s not that we don’t know what to do. It’s that we’re not given the financial resources to develop the programs and the physical space to do it in.
People think that culture isolates everyone, and is why organizations can’t reach certain populations. But too often that’s used as a scapegoat to explain why families of diverse backgrounds are not coming to a program.
Families tell me they know right away when they walk into a place when they don’t feel welcome. In Canada, racism is very polite. You can go to a program and still feel pushed out through the words they’re using, or the way they selectively decide to apply policy, or in realizing that you don’t have the right words to apply for a service. How many people in the program look like your family? How many decision-makers look like your family?
How many black families begin a program and then don’t go back? It’s not just important how someone enters a program, but how they exit. Part of it may be that they’re protecting their own safety. When you don’t do something in the manner that the person in authority likes, you’re afraid about how they may respond. Maybe they will call children’s aid. Black families are far more likely to have their children removed by CAS than other racial groups.
It’s the same thing with the mother who didn’t want to call police when her child has a violent meltdown. She’d rather the child take it out on her, because she knows existing options won’t help her family.
BLOOM: What did families tell you things would look like in their ideal world?
Sadora Asafaw: One would be having a specialized centre or hub that is working to support specific ethnoracial groups with the needs and struggles they have. It would build community capacity of black and other racialized families, so they can gather community input along with the best evidence to inform their programs. It’s not that everyone there has to be black, but you would hope to see more people who look like you and are working towards the same goal.
When parents talk about support groups, they say they couldn’t relate to what was talked about in traditional groups, because their parenting challenges were different based on their ethnoracial background. I don’t know of any place in Toronto that looks at the specific needs of black families with youth with developmental disabilities.
The reason I focused on black families was that they experience some of the most difficult challenges, and are often afraid for their survival. They’re afraid they might not survive certain encounters when it comes to their safety. What would an organization look like where they could aspire to more, and feel they can participate and really belong?
BLOOM: I know we’ve begun to collect health equity data from families.
Sadora Asafaw: If someone calls a code white [for potential violence], is data collected on that? That might show biases within staff, or a way to better manage situations in future. Look at where certain groups are being served in the organization. Some families come directly from SickKids for rehab. But what about community programs?
Maybe the reason a community program is not diverse is because it’s not easy to get to. Holland Bloorview is in a high-income area where homes go for millions of dollars. Perhaps many of the people attending a program live in close proximity to Bloorview.
Look at the duration that families stay with a program. If families don’t feel comfortable, they won’t stay. What about families who are discharged from a program because the organization felt it couldn’t support them? Are there higher rates of black families discharged from programs, because too many codes were being called for their child?
The other thing I didn’t spend too much time on, but that some of the families touched on, was to recognize some of the similarities between black families and black workers in healthcare.
Black staff in this sector tend to be personal support workers or nursing staff. They’re frontline, not in managerial positions. They’re often in contract positions, so their roles are somewhat precarious. It may be very difficult for them to share their experiences of racism, given the politeness that accompanies it in Canada. If they’re constantly advocating for families who have experienced something they perceive to be different or unfair, they may be viewed as a troublemaker.
If you have less developmental pediatricians that are black, less occupational therapists that are black, less scientists that are black, you have less black people for staff to look to for mentorship and leadership. It’s great that there are a lot of black workers in frontline health positions. But you need to see them in management and leadership positions. Otherwise it can make it very difficult for black workers to voice their concerns or opinions or perspectives.
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