Changing the stories we tell about disability and families

By Louise Kinross

Recently BLOOM reported on research about the role of hope and the invisibility of dads in children’s rehab. This was produced by Parenting Matters, a team funded by the Canadian Institutes of Health Research to study what it means to parent kids with disabilities like Down syndrome, autism or cerebral palsy. Scientist Lucy Lach, an associate professor in the School of Social Work at McGill University, is the co-principal investigator of Parenting Matters. She also has a unique connection to families at Holland Bloorview and has raised two children with significant learning disabilities. She’s working with Dr. Peter Rosenbaum from McMaster University and Dafna Kohen from Statistics Canada. BLOOM interviewed her about her work.

BLOOM: In 1980 you worked as a summer student at what was then the Ontario Crippled Children’s Centre. Was that your first exposure to disability?

Lucy Lach: Yes, I worked in accounts payable and purchasing. I had had one singular experience with a student in a wheelchair at my high school, but during that summer I got to see and know kids with a variety of disabilities who were receiving services there. I was 20 years of age and was completely taken with the culture of the institution. I don’t think I realized it at the time, but in retrospect it is here that I learned how special the culture of pediatric centres is.

BLOOM: What was that like?

Lucy Lach: I became caught up in the culture of what is now Holland Bloorview—in how positive it was and how the kids were treated by staff and how special the staff were. It was a wonderful place to be as an emerging adult. During that period I began doing some volunteer work at the Bloorview Children’s Hospital at Leslie and Sheppard.

BLOOM: What did you do?

Lucy Lach: I just hung out. I was there to be a peer. I played with the younger kids and took the older ones outside to engage with the environment. This allowed me to begin to get to know these young people whose ways of communicating and thinking were different from what I had experienced. Although these lives were viewed as tragic and unfortunate, I learned that there was a different story to be told. These children had a liveliness and a beauty that I had not been exposed to or fully appreciated before.

BLOOM: As a social worker at SickKids, you later ran support groups for parents of children with intractable epilepsy at Bloorview. What did you learn from that?

Lucy Lach: How our systems are failing them. I learned about what the kids’ and parents’ struggles were in day-to-day life: trying to balance work and appointments and ensuring their kids were safe, and managing these very unpredictable seizures, sometimes at night or at school.

I learned how the complexity of what they went through on a daily basis was missing in the literature and in the snapshot of time we had with them in the clinic. When they came to see the neurologist they would have 15 minutes at most.

The support groups helped me to get at that deep experience and to ask questions of them when they were in clinic in a different way—to elicit stories not just of despair or challenges, but also of how well they were managing. And it made me feel humble as a practitioner to realize that I didn’t always know how I could be helpful to people who were referred to me. I learned to feel okay approaching parents by saying: ‘I don’t know how I can be helpful, but help me understand what concerns you the most, and what you would most like to talk to me about.’

BLOOM: Working with this population must have been difficult. 

Lucy Lach: It’s so very hard for them, that’s absolutely true. But you know what? I also heard over and over again how they figured that out, how they managed it. So the story about grief and sorrow was also a story about amazing accomplishments, abilities and triumphs. In fact, I’m more prone to tell you about the latter. These are parents who didn’t allow the unpredictability of these events to rule their family life. They incorporated them somehow.

One of the most important things was to engage a community of peers. In the best-case scenario, when a child had uncontrollable seizures, one of the factors that allowed parents to say ‘Okay, you can do this’ was if their child had friends who knew what to do in the event of a seizure to ensure they were safe.

Safety was a primary concern. Sometimes professionals involved would make judgmental comments about how overprotective and indulgent the parents were. That drove me nuts.

Often school was a huge issue. Parents were told the student could come back when their seizures were under control, but the seizures would never be under control. So a significant part of my role was advocacy to help school understand that sometimes you just had to manage the seizures and the behaviour as opposed to eliminating them.

BLOOM: What were the rewards of this work?

Lucy Lach: The rewards were daily because I was there so long that I got to see kids grow and to see parents grow to become amazing and effective advocates.

BLOOM: Why did you decide to move into the research world?

Lucy Lach: At the time I was working in the epilepsy clinic, the research was filled with assumptions about families’ experiences of their child. It was mostly very negative, as it continues to be today. If you skew research questions so that they enquire exclusively about negative experiences, you will inevitably obtain answers that contribute to a story about trauma, negativity, pathology and distress. But if you ask parents if having a child with a disability was, in any way, growth-enhancing, some will tell you you’re ‘off your rocker’ while others will thank you for the question.

What I’m trying to say is that research contributes to a story about families and this story is a social construction of some reality that ends up being what people believe as being ‘true’ about themselves. If you document the complexity of the story, or a different dimension, the plot thickens.

BLOOM: When you first got involved in research it was about outcomes for kids following epilepsy surgery, right?

Lucy Lach: Yes. Although the neurosurgeons and neurologists were extremely hopeful about the promise of this surgery, our clinical experience was slightly different. The procedure was successful in improving seizure control, but families didn’t see the changes in quality of life they had been led to expect: they didn’t see changes in their child’s cognitive skills or behaviour. So my colleagues and I designed a rigorous study to generate findings about outcomes we could be more confident in.

This meant we could share fully with parents, before they consented to surgery, that this procedure will not significantly alter your child’s cognitive skills and behaviour one to two years out. We were happy to be able to be as truthful and honest as we could during the consent procedure and that consent now involved full disclosure.

BLOOM: That must have been incredibly disappointing for families.

Lucy Lach: Absolutely. Parents would come back after the surgery and say ‘now can you do some surgery on my child’s behaviour? Can you fix that?’ There, the idea of ‘managing’ as opposed to ‘fixing’ was really important. Maybe we can’t fix it, but we can help by better articulating and adjusting your expectations so that you can better manage your reactions.

BLOOM: Why is the Parenting Matters research needed?

Lucy Lach: The question that drove that whole enterprise for me was another taken-for-granted assumption in clinical practice about overprotective parenting and whether it was damaging for kids with neuro-disabilities. There were, and are, assumptions about how terrible it is that parents don’t allow their child with disabilities to do certain things, and if only they would stop hovering, then their child would be okay. My hunch was that this was a complete oversimplification of the complexity that families faced.

So Parenting Matters has generated quantitative and qualitative data that has begun to make the narrative about these children and families more complex and stir up a bit of controversy about previous assumptions.

BLOOM: What are the main Parenting Matters projects?

Lucy Lach: One is a systematic review of the literature on parenting of children with neuro-disabilities. A second is analysis of a large Canadian population-based dataset on parenting and rates of separation and divorce among parents of children with these disabilities.

The third is an environmental scan of policies and programs for families, where we provide links to information on services, respite care and tax forms by province.

The fourth project is a clinical study of 263 Canadian children with various disabilities. The data was collected at Holland Bloorview, as well as in Montreal, Calgary and Edmonton. Parents completed measures about the complexity of their child’s disability, their behaviour, quality of life, family environment, co-parenting relationship and marital system, and adequacy of social support. That’s where we also looked at overprotective parenting and quality of life.

BLOOM: Do you have results from the large dataset?

Lucy Lach: Yes. We learned that parents who have a child with a neuro-disability don’t differ from parents who have a child without a neurodisability (or problematic behaviour) in how positive and consistent their interactions are with their child. The downside is that they experience themselves as more ineffective as a parent.

BLOOM: Why do parents of kids with neuro-disabilities view themselves as less effective?

Lucy Lach: That's a really great question. That measure, of effectiveness, also taps into how negative parents feel about their parenting relationship so I think it has to do with expectations they have of themselves and of their child.

BLOOM: Do you mean that parents of kids with disabilities may be great parents, but they may have unrealistic expectations about their child that make them feel inadequate? Or, do you think that in general our culture’s tendency to value achieving certain milestones influences how parents feel when their child doesn’t?

Lucy Lach: All of the above. It’s a classic psychological explanation versus a sociological explanation and both can be valid. There are things you internalize from society about what a parent should be and look like and do, and how a child should respond. Then there’s the actual transaction that happens on the ground. It’s not either/or—one informs the other.

BLOOM: I think we can do a whole story on that! When will you have results from the clinical study?

Lucy Lach: We have two doctoral dissertations. One tests the role that adequacy of social support for the child and family plays in a child’s quality of life. The other examines the role that parenting attributions and behaviours play in families’ experiencing their child’s disability as having a positive or negative impact. We found in the first that when a parent feels like their child’s and family’s support needs are more adequately met, their child’s life quality is higher, even in the face of high levels of neurological complexity.  Next on my agenda is to examine the role that ‘overprotective’ parenting plays in child outcomes.

BLOOM: You have teenage twins with significant learning disabilities. Did your earlier work in the field of disability help you navigate some of the issues your own children faced?

Lucy Lach: Well, it was certainly hard to be on the receiving end of schools that were being judgmental and difficult with my kids and particularly with my son. Sometimes educators had already made assumptions about my son—they’d diagnosed him before anyone had actually administered a test. But absolutely, my research informs my parenting and my parenting informs my research.

BLOOM: What have you learned from raising your kids with learning disabilities?

Lucy Lach: That they’re not like me—they have other strengths that I don’t have. They are both socially gifted and can talk to anyone. As a child I loved to read and learn and study and my children are not like that. They are happiest when they are interacting socially. I get that, but as a mother it has been a bit of a struggle to not apply my standard to them.

BLOOM: I feel that we still devalue people who think differently—particularly in academic settings. Scientist Barbara Gibson here talks about the moral hierarchies of movement, and how we influence children’s development because walking is seen as the only acceptable way to get around. But I think we have moral hierarchies about intelligence. We make it so obvious that we value academic intelligence, yet we have many clients who have learning and intellectual disabilities. How do we convey the value of different ways of thinking? Could there even be advantages to different ways of thinking?

Lucy Lach: We definitely need to valorize different ways of knowing. There’s an emerging literature on different types of intelligence that is slowly making its way into the mainstream.

BLOOM: Have your thoughts on intelligence changed over the years?

Lucy Lach: Absolutely! I had no choice because my default position is to recognize strengths and abilities as opposed to inabilities. That’s how I operate. When I describe my kids as socially sophisticated I mean they have amazing social skills and intelligence and if they can capitalize on that in some way, in a pro-social way, then they’re going to be okay. Yet my kids have had no exposure to help them recognize the importance of their social intelligence. In fact, if anything, at times it has been devalued and mistrusted. What about work in the trades? What about sales? What about services? They’ve had no exposure to that. It’s really frustrating because choice matters.

BLOOM: I find it interesting that there are a number of studies about self-reported quality of life in people with Down syndrome, and typically the participants rate their lives very highly. But when you mention this to people who study quality of life, they discount the studies.

Lucy Lach: I find that fascinating. Some of the quality of life research I’ve been involved in subsequent to epilepsy surgery has looked at child and parent ratings of the child’s quality of life and the child inevitably rates their quality of life higher. Quality of life literature is a ‘dog’s breakfast’ quite frankly. So when you say ‘quality of life’ and another person says it, you may both be drawing on completely different assumptions and dimensions.

BLOOM: Knowing that parents of kids with disabilities are at greater risk of mental health problems, is there anything specific you do to take care of yourself or build your resilience?

Lucy Lach: Ha! For years I just ignored it. Now I recognize that between working long hours and my kids and husband and hitting age 56 this year, your health can go a bit sideways. I’m paying more attention to how much I’m walking, what I eat, and whether I go for regular checkups. And I do take vitamin supplements.

BLOOM: If you could change one thing in our health or social supports for families of kids with disabilities, what would it be?

Lucy Lach: We have navigation services spread across different sectors and institutions. Yet families experience feeling lost and uncertain. They don’t know what to access, where to access it, and how. We need to focus our efforts across diagnostic silos to make sure that every parent knows what they and their child are eligible for and to give them the tools to make informed choices.

We also need to be doing more to create opportunities for parents to support parents. There are things parents can say to one another that a professional could never say to them. There’s a street ‘cred’ there. In my next phase of research I’ll be designing peer support groups online—for parents across disabilities, not just within a disability group, who have children at similar developmental stages. I’m currently running focus groups to figure out what they need, how they would like it delivered, and by whom. No sense in doing anything without first hearing from parents.