When a child has 24-7 needs, mothers bear the costs

An early photo of two of Sheila Jennings' children

By Louise Kinross

As the mom of a son who had severe asthma and a life-threatening immune condition, Sheila Jennings learned firsthand that it was impossible to work outside the home and tend to her child with complex health needs.

“My interest in the support rights of mothers of severely disabled children began after I got divorced and set up my law practice while caring for three children,” she says. “My son missed about 40 days of school in Grade 7, and a similar amount in Grade 8. He had severe infections, was followed by four clinics, and was frequently in the Emergency Room. One time I was just about to go into the courtroom, and I had a call that something was wrong at school. I called my son’s father, who is an emergency room physician, to ask if he could find out what was going on, and he said: ‘I have someone here with a screwdriver in their head.’ Even when I had a spouse, he didn’t necessarily have the ability to drop everything. I started to get sick myself in 2005, and when I became very ill, I had no choice but to close my practice.’”

Sheila recently defended her PhD thesis called The Right To Support: Severely Disabled Children And Their Mothers at Osgoode Hall Law School. “Within complex care, visible and hidden costs have been offloaded onto caregiving mothers by governments,” she writes in the study's abstract. We spoke about her research, and why she believes that the extraordinary demands currently placed on Canadian mothers of children with complex needs might constitute ‘cruel and unusual treatment or punishment’ under section 12 of the Canadian Charter of Rights and Freedoms.

BLOOM: What was the purpose of your research?

Sheila Jennings: I wanted an answer to the question: ‘What are the legal rights to support for mothers who have severely disabled children, and what should they be?’ I thought it would be a very simple question. But it was anything but.

My project looked at literature, as well as 184 cases, which were mostly Canadian. These were cases where caregiving mothers brought law suits or defended against the actions of others. They took on the Canada Revenue Agency or social benefits, or said they needed more spousal support due to their child’s complex needs. I used cases from every jurisdiction and from an online database, so mothers can easily access them in support of their own complaints.

BLOOM: What did you find?

Sheila Jennings: It was fairly uniform that if the moms were single and unable to work, they were falling into poverty and struggling, and they were often opposed in cases they brought. There were sympathetic judges, but caregiving mothers’ support needs slid between categories in law, and often couldn’t be helped in court. There was the occasional win, which might take months or years. Litigating mothers became embattled while also providing care. Lawsuits are exhausting and stressful. And each case was usually just one win—there were hardly any systemic wins, where the court said from now on every mother who needs this support will get this amount.

One of the problems is that child support is considered for the average child. You can ask for add-ons, but the cost of respite care and basic nursing care must typically be fought for.

BLOOM: Can you describe one of the cases?

Sheila Jennings: One public law case was brought by a woman who was divorced and had a six-figure income. She had three children. She came to the Social Benefits Tribunal in Ontario to ask for funding through Assistance for Children with Severe Disabilities (ACSD). ACSD had said no, your income is over the funding cap of $60,000, so you can’t have the amount you say you need. Yet 50 per cent of her income was going to disability-related supports. 

She’s a good example of someone who had a full-time job and a big income, but it still wasn’t enough to make it manageable. The tribunal agreed that she'd made the case for the additional money, but it was on a one-off basis. Three years later, she was back in front of the tribunal when her funding application, over what was, in fact, a discretionary cap, was again refused.

I have so much admiration for these women. They’re living extraordinarily difficult situations with their children, and they’re rolling up their sleeves and taking on the government, or the other parent who doesn’t want to pay. The other parent says it’s the government’s job to pay, and the government says it’s the other parent’s job.

The system for disability supports across Canada is very fractured. It’s not a uniform system, nor can it be easily accessed. The ministries frequently shift people around and change programming. There's rarely an expert in charge with a great deal of knowledge on the file. It’s very hard to get systemic change or sustained change. Much of the work caregiving mothers do is invisible. People can be sympathetic, but they don’t realize how much work is involved and what the implications are. This is a different form of motherhood, and it needs to be supported as such.

BLOOM: I remember when my second child was born without disabilities, being absolutely shocked at how easy her care was.

Sheila Jennings: Yes. Reflecting back on when my third child, who is athletic and healthy, was born, it highlighted for me that the mothers I was studying were different. The support needed for a child who is playing soccer, has tons of friends, doesn’t get sick often and has no physical issues that land them in hospital, is not comparable.

I think professionals who are going to be working with caregiving mothers should be going into the home for two to three days, to see what’s involved. In my project I decided not to call the mothers 'complex-care moms.' I decided to use a feminist lens and use the term 'maternally complex care.' It’s a different form of motherhood.

Too often, people see a regular mom, and they see the complexity as medical- and hospital- and doctor-centred. That is treatment.

It's the mother who is providing the complex care. 

Maternal complexity, rather than medical complexity, gives status recognition to the woman who's doing the care, and Canadian research shows it’s 97 per cent women. Many have given up jobs to care for a child with additional needs. It's an important role in society that carries a price, and it doesn't come with workers' compensation, pay or a pension.

I'm interested in how these women are seen and treated in our culture. They get sympathy and sometimes pity. Or even admiration. But care of this kind is not recognized as the work it is. I’ve said before, going to court as a lawyer on a difficult file was easier, any day, than dealing with the objective and subjective maternal complex-care issues that would arise with my son. 

Caregiving mothers may be traumatized while providing care, and at the same time you’re also running the house and doing everything else women are socially assigned to do.

My research also showed that it's hard for children with complex-care needs to see their mother's exhaustion from the heavy lifting, so to speak. It's an issue for children too.

BLOOM: Did you come up with any recommendations for change?

Sheila Jennings: One recommendation I considered is the treatment of caregiving mothers in light of section 12 of the Charter, which provides that ‘Everyone has the right not to be subjected to cruel and unusual treatment or punishment.’ 

I made preliminary arguments that to have mothers alone held responsible for this care, in the manner it’s currently provided, meets a legal test to show section 12 is violated. 

Mothers’ health is being negatively affected, and not just a little bit. There’s even a study out of Australia about how mothers of complex children have much higher levels of mortality.

BLOOM: There was also a population-based study done by Dr. Eyal Cohen at SickKids that showed an increased risk of early death in mothers of children born with anomalies like heart disease or Down syndrome.

Sheila Jennings: Right. So we know this correlation is an issue. 

BLOOM: What was the typical outcome of the legal cases you analyzed?

Sheila Jennings: Overall, you can see that the mothers are embattled. For example, there was a 2004 mother with a child with progeria, which causes early and rapid onset of aging. She wanted an increase in night nursing hours, and she wanted the government to subsidize, or pay for, private nurses she had to hire when the CCAC nurses didn’t show up. She also didn’t want CCAC to send her personal support workers who didn’t understand her child’s condition.

BLOOM: I looked at the case you sent, and she also wanted registered practical nurses who did overnight shifts to be paid at the registered nurse rate to better retain them. And she wanted a back-up plan with the hospital, so that CCAC-booked shifts wouldn’t be cancelled.

Sheila Jennings: Yes. Unfortunately, she had no legal leg to stand on. The CCAC client was her child, not her. I address this issue as one of relational rights in my project. She lost her claim. It’s 15 years later, and these home-care failures haven’t gone away. We read about the same problems from parents like Marcy White and Samadhi Mora-Severino. We have another generation dealing with the exact same thing.

BLOOM: How could section 12 be used to create change?

Sheila Jennings: Lawyers and mothers doing this kind of care need to get together to list the harms they’ve experienced, and to consider what kind of legal action is possible.

For example, it’s not okay to be on call 24 hours a day, nor to have consistently interrupted sleep for years. This is way outside the gamut of modern day labour standards. A mother interviewed recently by a Montreal newspaper said ‘What kind of world do we live in, where I’m supposed to be up, day and night, providing heavy physical care?’ There isn't a union or workers' compensation to protect these women when they're injured or become ill. Caregiving mothers bear the risks. That's monstrous, and as a society we can do better.

BLOOM: You mentioned that you looked at how our culture views mothers of children with disabilities.

Sheila Jennings: Yes, I did, and it's very interesting. The special-needs mother is romanticized, and put on a pedestal, and is portrayed as having a high cultural value. You think of Princess Diana in Pakistan holding a dying child, or Princess Kate landing on the runway in Alberta, and hugging a child who had obviously been in cancer treatment.

But that runs contrary to the way that caregiving mothers, particularly those who provide maternally complex care, are treated at a provincial level. The reality is that they’re often isolated and alone. Donna Thomson’s book The Four Walls of My Freedom alluded to that. There is exclusion, not only of severely disabled children, but of their mothers too.

BLOOM: What are your next steps?

Sheila Jennings: I hope to teach again this year. I taught last year at the Ontario Tech University, and I was able to bring these issues up in my family law course and also, to a degree, in my human rights course. Students were very interested. I'm also in the midst of writing two papers and preparing a proposal for a book with an academic press.

In addition to her years practising family and child welfare law, and doing her PhD, Sheila Jennings did an MA in critical disability studies. You can follow her on Twitter @SheilaKJennings.

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After trauma, parents need space to 'fall apart emotionally'

By Louise Kinross

Say the word ‘trauma’ among parents of kids with complex medical problems and disabilities, and the floodgates open. Maybe their child is medically fragile, and they run a mini-ICU at home, constantly ruminating over how to prevent the next crisis. Maybe their child is losing skills over time. Maybe they’re tired of fighting—at school, with doctors—for what their child needs. Maybe as their peers become empty nesters, supports for their adult child vanish, and their caregiving role ramps up.

In his new book Trauma and the Struggle to Open Up, Dr. Robert T. Muller brings together his own experiences working with people struggling with painful histories, the research on treatments, and a history of how culture influences whether we support, or silence, trauma survivors. “In trauma, ideas about the world and how things ought to work—the illusions we operate under daily, to feel safe and secure—no longer fit our lived experiences,” writes Dr. Muller, who is a clinical psychologist in Toronto and a professor in the faculty of health at York University.

We spoke about how our parents may experience trauma, answered some questions from readers, and looked at how to find help.

BLOOM: What is trauma and how does it impact how we function?

Dr. Robert T. Muller: Trauma is a big word that’s used to mean different things. Of course when we use the definition post-traumatic stress disorder (PTSD), we mean someone who’s had a real experience in the real world that’s left them really struggling in their functioning. These are truly overwhelming experiences. They overwhelm a person’s ability to cope.

It could be physical or sexual abuse in a family, or service people who have been in combat situations, or refugees in war-torn areas. We also see this in people who have experienced huge medical or developmental losses. Perhaps a child has died. They’re left with difficult memories, with flashbacks. These experiences are real and overwhelming.

What’s common is the person is left with great difficulty coping. Trauma also affects the body. People’s cortisol levels get affected, their immune system is affected. We see people who have medical symptoms as a result of these traumatic experiences. They may have ongoing headaches or pain-related problems or be more susceptible to illness. They may have irritable bowel syndrome.

BLOOM: You note in your book that a common response to trauma is avoidance.

Dr. Robert T. Muller: There are people who have known traumas—there’s independent evidence that they’ve had these experiences—yet they avoid thinking about it, they don’t want to talk about it. It’s important to bear in mind that we don’t want to be judgmental of anyone who uses avoidance strategies. They do it for a good reason, because these experiences are truly overwhelming.

BLOOM: It’s a natural protective reaction.

Dr. Robert T. Muller: It’s what we need to do in order to manage, to try to protect ourselves from overwhelming memories. But after a while it catches up with you. There’s only so long you can avoid these things.

BLOOM: What kind of trauma symptoms might we see in parents of children with complex medical problems or disabilities?

Dr. Robert T. Muller: People respond to the disabilities of their children in very different ways. There are a whole range of responses. For some people, raising a child with disabilities can be a highly enriching, growthful and incredibly important experience in their lives. For others, it can be highly stressful and a lot of loss is associated with it. And there’s everything in between. Sometimes it’s both. It’s really complicated.

BLOOM: I’m thinking that there’s a difference between a one-time traumatic event with your child—like learning your child has a disability, but they’re stable health-wise and can learn to adapt—and repeated life-threatening medical emergencies in your child, or dozens of surgeries, and some don’t go as planned, or being slapped, over time, with new life-changing diagnoses that stack up?

Dr. Robert T. Muller: It makes a huge difference. With one-time events, the adjustment can be difficult. Perhaps parents are adjusting to a loss of function in a child. But then, once the loss is recognized, and a plan is made as to how to move forward, and the family is supportive, you can move forward and adapt to the situation. You can deal with a certain amount of loss.

It’s chronic, ongoing loss and deterioration that is so stressful. When there’s chronic deterioration of a child’s functioning, and parents keep hoping, and then that hope ends up turning into more and more loss, that is hugely stressful.

BLOOM: For parents facing those repeated traumas, wouldn’t it be even harder to open up? Like how would they even find the mental space to do that?

Dr. Robert T. Muller: Parents have to have a space that is their own, where they have licence to fall apart emotionally, and say I’m distressed, I’m scared, and to talk about how they’re feeling. It might be with a therapist or a parent support group. Sometimes people may not even feel comfortable sharing their internal fears with their partner, because they feel they have to put on a brave face.

Having a space where you can talk about how you’re feeling, and then, by the end of the hour, put your pieces back together, so you can go out and be supportive of your child, is essential. Of course your child needs to know you’re protecting them as best as you can, and when you’re with your child, you want to be as supportive and positive and hopeful as possible.

BLOOM: I have a question from a reader.

‘I’m very sensitive to seeing or hearing an ambulance. No matter how good a mood I’m in, this encounter sends me straight back to my son being born too early and very sick. I then have a hard time breathing, get a high pulse and I start to cry almost every time. It leaves me drained of energy and becomes a bit awkward sometimes. It is seven years since my son was born, but it still happens. My question: Can I do something to treat this, to better cope? Is it post-traumatic stress disorder? I have told my psychologist about it, but I don’t get any explanation or advice.’ 

Dr. Robert T. Muller: The short answer is that PTSD should be investigated, and it sounds like a distinct possibility. Absolutely, there are things we can do when we know people have experienced traumatic events and they continue to get symptoms. 

The physiological response this parent has to an ambulance indicates a person is being triggered. There are techniques to help people notice their triggers, to begin to identify them and pay attention to them. If they notice them when they’re happening, they may not be as affected for as long.

Then they can start learning grounding strategies: when you notice you’re triggered, you do things to pay attention to the here and now, so you don’t get drawn back into the event. Relaxation and mindfulness strategies can be helpful. Trauma-informed yoga can be helpful. Psycho-education is important.

BLOOM: What’s that?

Dr. Robert T. Muller: Reading about trauma, and how trauma affects the body. The Body Keeps the Score is a profoundly written and very helpful book. My new book is intended to be helpful for people as a resource to learn about trauma. 

Working with a trauma-informed therapist is important. They can teach you how to recognize your triggers, emotional regulation skills, and how to notice, when you’re paying attention to your body, feelings of shame, betrayal and disappointment. These are all feelings that have an effect on the body.

In the medical situations we’re talking about, people sometimes feel betrayed by the medical community. Or they may feel profound disappointment and shame about choices they made in the care of their child. Noticing these feelings, and working through them in therapy, is important.

Martial arts and trauma-informed yoga can be very helpful for people with a trauma history. They teach us to connect with our bodies. People who have had trauma get disconnected from their own body, and drawn into memories, and they can feel like they’re outside their own body.

BLOOM: A few of our parents commented that PTSD is very real for them. But they don’t feel it’s acknowledged. One questioned why they weren’t told in the neonatal intensive care unit that they might struggle with these issues. I thought this tied with a theme in your book about how our culture can make it hard for people to share trauma stories, that there’s a silencing that happens.

Dr. Robert T. Muller: I agree with you about the silencing. One of the great limitations of the medical community is that it’s not become trauma-informed. We see this all the time when someone goes to the family doctor with depression symptoms that are secondary to trauma. And we now know that people who have trauma symptoms, very, very often have depression. The family doctor, in a 15-minute visit, who doesn’t know the person well, may think ‘I’ll try them on an [anti-depressant].’

That’s not a trauma-informed approach. If you have a parent struggling with a child who has multiple medical treatments and disappointments along the way, and feels that the medical community has only partially heard them, this parent is not necessarily going to benefit that much from being put on an [anti-depressant]. They don’t have a standard, garden-variety depression.

This is someone dealing with tremendous loss, and overwhelming feelings secondary to a traumatic event, and they need to be able to sit down and talk with people.

BLOOM: Another theme in your book is about how family members can experience the same event very differently. One of our readers said: ‘Our biggest struggle is managing our feelings and worries around traumatic events while supporting the child who has experienced it, and his siblings.’

Dr. Robert T. Muller: It is so challenging and difficult for parents to navigate this. In a family where there’s a chronic medical condition, there is the worrying about the child and trying to get the child the support and treatment they need. What happens to the couple’s relationship? Is the couple still able to express love and affection towards one another, or is all of the attention placed on the child with the medical illness?

Siblings may feel that no one pays attention to them. I worked with a young man whose brother developed a chronic illness when he was a teen, and it was so hard for him. His father had died, and his mom had to navigate all of the medical care. This client understood what his mom was going through, and loved his mom, and she sounded like a really good mom. Even though a part of him knew that his mother couldn’t, and shouldn’t, have done anything differently in her care of his brother, another part of him felt cheated out of a childhood. In therapy he needed to express his disappointment in his mother.

BLOOM: We have a number of programs for siblings, and I think you’ve hit on that conflict siblings can have where intellectually, they understand why their brother or sister has to be the main focus. They get it! But emotionally, they feel like ‘I want my mom!’

Dr. Robert T. Muller: That’s exactly it, and they need a space to express that.

BLOOM: Another reader asked whether women and men experience trauma differently?

Dr. Robert T. Muller: I think women have done a much better job of making it clear that this is a real thing that needs to be taken seriously. We’re still far away from taking it as seriously as we need to. There aren’t enough support groups for men. There aren’t enough therapists, for example, who focus on treating sexual abuse in men, even though one in six men have a sexual abuse history. Not seeking help doesn’t mean the problem goes away. In men, there’s often a sense that I’m going to tough it out, I’m going to be a guy.

BLOOM: So men may feel pressure not to talk about their feelings.

Dr. Robert T. Muller: It’s better than when I was a kid, but many dads I’ve worked with still feel the need to hold it all together and have difficulty being honest about their vulnerable feelings. We’re moving in the right direction, and giving young men more options to express vulnerability.

BLOOM: One of our parents talked about the isolation she feels because her parent-child experience is out of step with the norm. When her friends are becoming empty nesters, she is coming to terms with the fact that she won’t have an empty nest, and many of the supports her young adult child used to have will vanish. So her responsibilities will be magnified.

Dr. Robert T. Muller: One of the things we’re talking about here is the issue of losses that continue. But it’s not only loss, because it can be very enriching to raise a child with complex developmental needs. 

On the other hand, this individual is being reminded that her friends are watching their kids move out. If this parent finds a way for her child to live independently, it may look very different from her friend’s children. Or maybe the child won’t live independently. Do people understand how difficult it is? How stressful it is? Friends may try to get it, but they don’t quite get it. They don’t get that stressful doesn’t even begin to describe it. That is very isolating.

BLOOM: You talked in your book about how people who have experienced trauma get used to pretending things are fine. This reminded me of a book written by one of our parents, Jennifer Johannesen. Her son Owen had complex medical problems, and died when he was 12. Jennifer wrote about how when she and her son were meeting with therapists, or others out in the world, ‘I would always wear my shining-hero cape.’ We get the sense that professionals expect her to be ‘supermom,’ and keep it all together. ‘There’s nowhere to go with the reality of hopelessness,’ she told me.

Dr. Robert T. Muller: Part of it is that we have these different personas. She had the role of the rescuer or saviour, but it’s an impossible role. When your child is limited in some way, it’s impossible to be the saviour. You need a space where you can feel sad and worried, and open up about it. It may be very difficult for you to do that, but you need it.

BLOOM: You wrote in your book about cultural influences—like the positive thinking movement—that encourage people to suppress sadness.

Dr. Robert T. Muller: Yes. On the one hand, the person knows there’s a loss, but there’s a lot of pressure put on them to wear the super-hero cape. Then, when they feel the loss, they feel bad.

BLOOM: Like, what’s wrong with me?

Dr. Robert T. Muller: That’s shame. It’s important for people to understand that it’s okay to feel a sense of loss. It doesn’t make you a bad parent.

Of course, when we communicate with our child, we want to be positive and supportive and as hopeful as possible. We don’t want our child to become the parent’s therapist.

But a part of us can feel sad and deeply worried. For example, I feel sad that I can’t pay enough attention to my child’s siblings. Parents need to know that it’s okay to feel these things.

BLOOM: I googled ‘trauma, therapist and Toronto,’ and was surprised at how few names came up. How can a parent find a therapist and are they publicly funded?

Dr. Robert T. Muller: There are a number of OHIP-covered trauma programs that are not only for people who are survivors of physical or sexual abuse. A parent who is experiencing post-traumatic symptoms related to a child’s medical illness may be eligible. There’s a program at Women’s College Hospital, at Mount Sinai Hospital, and at the Homewood Health Centre in Guelph. 

What’s important is that the therapist has worked with people who have had different trauma histories. When you’re shopping around for a therapist ask the questions: Have you worked with people who had post-traumatic stress disorder? Have you worked with people who experienced losses because of family issues dealing with a child’s severe disabilities or illness?

BLOOM: In your book you talk about how the relationship between a therapist and client is more important to a good outcome than a particular approach.

Dr. Robert T. Muller: Evidence-based research has been showing this about psychotherapy in general and trauma therapy specifically. In our quest to say ‘I’ve got the best brand of therapy,’ what is lost is that ultimately any brand of therapy is pretty much equivalent—if you have a good therapy relationship where the therapist is very attentive to what’s happening between the therapist and the client. 

The good news is that if you have trauma symptoms from being in a family situation where you’re coping with developmental losses or illnesses or disabilities, and you seek a therapist, and they say ‘I do cognitive behavioural therapy’ or ‘I do emotion-focused therapy,’ those issues are less important than whether the person is trauma-informed.

Do they know how to deal with trauma issues that may come out in the therapy relationship? Painful feelings can be provoked in the client and in the therapist. Perhaps the person had doctors who they feel betrayed by, or deeply disappointed in. Or maybe they had doctors who say ‘Be positive,’ and they feel I can’t ever admit that I’m feeling pretty negative right now. The therapist needs to be really attentive to when the client is hurt by something they say, and when they’re encouraged by something they say. 

You can read more about Dr. Robert T. Muller's work here. He is also the founding editor of The Trauma and Mental Health Report, and lead investigator on several multi-site programs to treat interpersonal trauma. His new book was recognized as the best written work on trauma in 2019 by the International Society for the Study of Trauma and Dissociation.

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