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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Self-compassion may fuel parent resiliency

By Louise Kinross

Greater self-compassion was related to less stress and depression in parents of adults with developmental disabilities, according to a study in the Journal of Applied Research in Intellectual Disabilities.

The findings are based on self-report measures of 56 Toronto parents who attended one of two six-week groups as their children waited for services after leaving high school. One was a mindfulness group where they were taught to pay attention to their feelings and thoughts in an accepting, non-judgmental way. The other was a group providing information and support on getting services, many of which are wait-listed. One-quarter of the adult children didn't have anything to do weekdays.

The paper defines self-compassion as “being touched by and open to one’s own suffering, not avoiding or disconnecting from it,” and “generating the desire to alleviate one’s suffering and to heal oneself with kindness.”

The two parent groups didn’t focus specifically on self-compassion, but the mindfulness group included learning how to do a loving kindness meditation that begins with a focus on the self.

The current study found self-compassion was negatively correlated with depression and stress—even after controlling for parents’ perceived caregiving burden; for parents of children with autism, who sometimes have more stress and depression than parents of children with other developmental disabilities; and for neighbourhood income.

“Self-compassion is something that matters and that we need to pay more attention to,” says investigator Dr. Yona Lunsky, a senior scientist at CAMH who partnered with Developmental Services Ontario and Community Living Toronto to run the groups. “Parents are very compassionate when it comes to their own kids, but do they have that same compassion for themselves?

“Often, these parents feel inadequate. Why do they feel inadequate? Because of all of the things they’re supposed to be doing to make sure their child is okay. Sometimes those things work, and sometimes they don’t, and sometimes that’s hard on parents. They may experience inner psychic pain, or the pain of the child or spouse or other siblings.”

Parents’ first reaction may be to dismiss that discomfort. “We don’t have time and we’re scared to look at what’s going on in ourselves—that we are suffering. We think ‘If I’m going to be strong, I won’t pay attention to that, and I’ll keep going.’ But if we’re disconnecting and pretending it’s not there, we’ll never relieve that suffering, and our approach will eventually be harmful.”

Yona likens it to an athlete who continues running on an injured knee. “You have to notice what’s going on when you’re in pain, so you can treat it with gentleness and love and care.”

Parents often feel an automatic sense of compassion for their child, but don’t extend the same kindness to themselves. “Maybe instead of berating yourself because you did something wrong, you can forgive yourself, or notice how you’re experiencing it, or just be gentle. It’s about gentleness.”

Yona notes that there’s a body of literature on self-compassion in the general population, but work looking at its role in parenting children with disabilities is early and emerging.

“We had a sense of self-compassion's importance for parents from past research, but this is the first study to demonstrate its association with mental health for parents of adults with developmental disabilities," says Suzanne Robinson, a graduate student at York University who was lead author and analyzed the data for the study. Suzanne is doing her PhD in clinical developmental psychology and worked as a summer research student at Holland Bloorview in 2010.

Yona says future research could look at understanding why some parents of children with disabilities are more self-compassionate than others, and how to foster self-compassion in this population.

You can contact Yona at Yona.Lunsky@camh.ca.

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It's hard to tell when special-needs parents are 'drowning'

By Tina Szymczak

In 2010, our darkest times as a family, I began to use the analogy of a swimming pool to describe the difficult parts of our adoption and disability journey. I hope the analogy will strike a chord with other people who struggle to care for another family member, young or old.

When my husband and I decided to pursue adoption, we never expected it to be easy. However, there was no way to know how very hard it would be, until we’d experienced it ourselves. Throughout the adoption process we were told again and again that to bring an older child into our home from the foster care system would be a huge leap of faith.

I now picture the adoption process as a huge leap into a swimming pool. In the adoption classes everyone stands around the pool. During the home study process and disclosure you get your feet wet. If you want to adopt after that, you better be willing to jump into that pool with your child, whether you know how to swim or not.

When we were given information about our son we did what we thought was due diligence. We asked all the right questions. We jumped in the pool knowing that our son couldn’t swim, but convinced he would learn, with us there with him. We were naïve and thought that if we needed services we’d just advocate for and get them (try not to laugh at me—I’d been working in early intervention for years and should have known better).

After a while we grew tired of holding our son up. We had to face the reality that he wasn’t learning to swim, no matter what we did. We called in more experts. They blew us out of the water when they told us he’d never learn. We grieved and reeled from this new information, but refused to give up.

We called for back-up, but what we got was a bunch of people standing around the pool. They wouldn’t get in with us. Some would sit on the edge and get their feet wet and give us helpful suggestions. That would buoy us for a little while. Most refused to sit. They’d stand in the distance and judge us and occasionally ask us if we were ready to give up and give him back.

People would come and go. Occasionally we were left with no one. A few times some amazing soul would come along and, when no one was looking, jump in the pool and hold up part of my son. Then their boss would come along, or it’d be the end of their work day, and they’d have to get out.

Our son’s diagnoses kept piling up—first Tourette syndrome, ADHD and obsessive compulsive disorder. Then later, autism and sensory-processing disorder. Then the biggest one: bipolar disorder.

After many years our son got bigger and he grew frustrated by his lack of progress.

We no longer cared if he ever swam on his own. We just wanted him to enjoy being in the water again. We knew we needed help to find other ways to accommodate him in the pool.

We looked around. We yelled for help. People came back to the side of the pool, shaking their heads and questioning how we’d ever managed to keep him afloat for so long. We politely but firmly asked for help. They asked if we wanted to give him up, send him back. They wanted us to admit defeat and get out of the pool, leaving him there. That was the only way the system could help us, they said.

We refused. We began splashing and making all kinds of noise. We blew whistles and got the attention of the people in charge. All the while though, I was beginning to drown. All those years of holding my son up had taken their toll: my body was failing.

Some wonderful people jumped in and lovingly took our son, but I was drowning. I couldn’t even begin to tell others what was happening. I later wondered how so many good, well-intentioned people never recognized what was happening to me.

Then I read an article called Drowning Doesn’t Look Like Drowning.

“The Instinctive Drowning Response—so named by Francesco A. Pia, Ph.D., is what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind.”

Drowning, from the surface, is quiet and undramatic.

Isn't it like that for us as parents? People look at us and see the “together” image we’re trying so hard to portray. We hide our weakness and fear—often times because we know people won’t take us seriously or our child won’t receive something—an intervention or placement—they need. Even as we’re unravelling, sobbing or screaming on the inside, we dress nice, fix our hair, arrive early and sometimes even bring cookies.

We keep on top of referrals that need to be made, reports that need to be sent and IEPs that need to be revised. We deal with meltdowns, illness and messes at home. We cry at night when our children are in bed because during the day we need to hold it together. If we don’t do it, no one will. We find the strength to call for help for our children. But we can’t do the same for ourselves.

We drown silently.

It wasn't until my son went into a therapeutic residential placement that I finally had time to take a step back and sort out what was my need and what his was. I realized that I needed to go back to therapy and I needed to reconnect with my friends that I'd let fall by the wayside. I also needed to take care of myself. I had cancelled and rescheduled appointments for dental, eye care and physicals so many times I'd lost track. Probably the biggest thing I did to stop drowning was to lay it on the table for my spouse so we could figure out who would be responsible for what. He turned out to be a great supporter and partner.

I don’t want to imply that our whole journey has been horrible (I’d jump in the pool again for our son, without hesitation). There have been many more loving, touching, heart-warming times. But I’m writing about the periods that are very difficult. As my friend and fellow parent wrote: “Yes there’s an idealistic tropical paradise pool and there is also a shark scenario, but reality is somewhere inbetween.”

As I assist other families and work in our community to change services, I’ve tried to pinpoint common “drowning” signs in families like ours.

If the parent is avoiding social events, holing up in their house or crying all the time, then you need to gently step in. Listen to them. Be non-judgmental and ask questions, so we know you're listening and interested.

It can be hard to know how people are doing if they don’t share their struggles, but you can always do the following:

Make meals or give gift cards to order food. Don't ask if you can do it. Just do it.

Offer to take the other children when parents have to take their child with a disability to appointments.

See if your employer will let you donate vacation or sick days to your coworker. We tend to use up a lot of days for sick kids, or when our kids are kicked out of school.

Come over and do a couple of loads of laundry.

Drop a card or quick note to let us know you’re thinking of us.

Let us vent about our kid or a particular situation that’s developed. Don't judge us.

Remind us that no one expects us to do it all alone

In addition to teaching people what to look for in parents who are barely treading water, perhaps we could adapt the pool and hire trained lifeguards to get in with us.

You can follow Tina Szymczak at Spirited Blessings.

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To our nurses: You are the heart of rehab

By Louise Kinross

When your child is an inpatient at Holland Bloorview, the staff you will come to rely on most are the nurses on your unit.

When your child moans in pain after his body cast is removed, because his muscles are in spasm, it will be a nurse who sits with both of you, remaining remarkably calm as you hyperventilate, and problem-solving to figure out a solution.

Our nurses are highly skilled in caring for children with complicated disabilities and medical problems—and their parents and families, who are often traumatized. They are ingenious in coming up with ways to distract kids from painful procedures or in making something unpleasant, like having a dressing changed or blood drawn or taking a medication, bearable.

Our nurses provide the best medical and emotional care to our children and families.

Of any staff member, it is our nurses who will be with your family the most during your inpatient stay.

Our nurses are our children’s greatest champions as they progress through the rehab process, and their constant allies when times are tough.

When my son was hospitalized here, we came to depend upon their handmade heating packs for pain: wrap three damp facecloths in a blue pad, secure with orange hospital tape and heat for a minute in the microwave. They were soft, moulded to the body and carried a bit of nursing magic.

When everyone goes home for the weekend and the hospital becomes a ghost town, and you feel incredibly lonely and alone, it will be the warmth and encouragement and presence of the nurses that lift your spirits.

Our nurses instill confidence in parents' ability to learn how to care practically for their child after surgery or trauma. They make what feels impossible possible.

Please join me in saluting all of our nurses at Holland Bloorview during National Nursing Week.

And please share a story about how a nurse made a difference in your life.

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Schwartz Rounds uncover the heart of healthcare

By Louise Kinross

As a parent, how do you define compassionate care? Have you ever broken down when describing something troubling about your child and their care?

If so, what reaction from the clinician made you, as a parent, feel cared for?

Earlier this month Holland Bloorview was the first hospital in Canada to partner with Boston-based Schwartz Center for Compassionate Healthcare.

The Schwartz Center is a non-profit organization that’s developed the Schwartz Center Rounds to give hospital employees an opportunity to share the emotions they experience when working with patients and families in the most challenging situations. The goal is to bring the humanity back to healthcare. More than 375 health facilities in the U.S. and about 100 in the U.K. are conducting Schwartz Center Rounds. Caregivers report that the program increases their empathy for patients and families and better prepares them to meet patients’ needs; improves teamwork; and decreases stress and isolation.

Non-identifying patient cases are presented and caregivers share their experiences confidentially.

At Holland Bloorview’s first Schwartz Center Rounds session, staff noted that their training hadn’t prepared them for some of the painful situations they face in supporting parents whose children have experienced life-changing trauma.

“How do you maintain your emotional composure?” asked one clinician. “Do you maintain your emotional composure? And why do I feel that I have to do that?”

Has a professional caregiver demonstrated compassion in a way that you found helpful? Please share your stories.

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How to hear what the heart is saying

By Louise Kinross

Last year at an American conference on patient/clinician communication, Holland Bloorview family support specialist Lorraine Thomas participated in a simulation.

An actor playing the part of a patient was lying in a hospital bed in his robe. He had a number of scripts for clinical interactions and randomly picked people in Lorraine’s group—including doctors and nurses—to role play the part of the health professional.

“With me he started by saying ‘My mother had this disease and now I have it too,’” she recalls. “I said ‘I’m sorry to hear that’ and he came back immediately with ‘But it’s not fair. Why did it happen to me?’ He was there to push our buttons and take us out of our comfort zone. Then he said: “I saw my mother die of this disease and it was awful. I promised myself I would never let myself go this way. I looked after myself and had regular checkups and it still happened to me.’ Then he started sobbing.”

Lorraine says she was so concerned about appearing “professional” in the eyes of the clinicians watching, that she panicked. “When the actor started sobbing, it was a little too real. I got flustered, wondering whether I should hold his hand or pat him on the back. But I was aware that the other health workers might think that wasn’t professional. I said ‘I know it isn’t fair, but sometimes that’s how life is.’ The actor and the group groaned and said ‘You can’t say that.’”

Lorraine had “overthought it,” the group told her. “I needed to respond to the emotions behind the patient’s words. So it would have been better if I made a physical gesture—like patting his back or holding his hand silently. Or even saying “‘I'm so sorry, this is very hard for you.’   

“The actor said the way I responded made him feel like I wasn’t really listening to him. That I was glossing over things by making them abstract. He said ‘I don’t care about “that’s life.” This is happening to me, and this is personal.’”

At the conference Lorraine learned about “deep listening”—described as a whole body experience meaning “I give you my ears, my eyes, my undivided attention and my heart.”

Instead of jumping in to resolve or fix the client’s or parent’s problem, she says, “we need to look beyond the words at what is the emotion under it. We need to acknowledge that emotion, whether it’s sadness or anger or fear: ‘I understand that you’re afraid or very worried. I hear you.’”

Often clients and parents aren’t looking for an answer, or to be given a list of “action items” to resolve the problem. In many cases, they have problems that can’t be resolved in a logical way.

“The group felt I was trying so hard to be professional that I was holding back on my emotions and I didn’t trust my response. Sometimes briefly squeezing a person’s hand or a neutral touch on the back or shoulder can physically ground people. It’s a way of saying: ‘I’m here okay? I’m here and you’re here.’”

Lorraine says the most important thing in difficult clinical conversations “is to be present and in the moment. The person in front of you needs to be the only thing on your mind. Don’t start thinking ‘I’m going to make this observation’ or ‘I’m going to ask this question.’ Just be present in the moment.”

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Why is it so hard?

By Louise Kinross

"Let me get this straight," my chiropractor said.

"You've had this pain in your neck and shoulders for 28 years, but you've only got $250 to fix it with?"

"Yes?" I said, with a plaintive expression on my face.

I sat on an examining table with my legs dangling in the air, like a child, and the doctor sat in front of me. I'd seen him for a series of sessions a year ago when my knees got really bad. Now my neck and shoulders, which I've had ongoing problems with, were burning. 

The night before I had to lay down on my back at 7 p.m. 

"It hurts too much to carry my head around," I explained to my husband, who was sitting in the other room. 

Shortly after that I called out: "I can't pick up my cell phone." 

"Why?" 

"It's too painful. I'm lying here with nothing to do. But it hurts too much to hold up the phone."

"Do you know how pathetic that sounds?" he said.

The chiropractor had taken a video of me to show that when I thought I was sitting with my shoulders down and even, they were completely wonky: one was way up and the other way down. When he felt my spine he said it wasn't "where it should be" and he wanted me to have an x-ray.

Why had I let things go so far? 

Just the week before when I saw my therapist I told her I was burnt out, even though I was taking a vacation day. "That's what you said the last time I saw you," she said. 

I was into the fifth week of a very exciting research project at work: nurses from across our three inpatient units were coming together for 90 minutes a week to write and draw about their emotional reactions to working in children's rehab. I was running the groups with two amazing researchers from the University of Toronto: one the illustrator in residence of the medical school, and the other heading up a new series of humanities courses at U of T, who was also  a Phd in English.

But it was something extra, on top of my regular work.

Sometimes I'd do a fantastic interview for BLOOM at work and I'd get so excited about it that I sat up late at night to finish it at home. I was also doing some personal writing at home, so after a long day of writing I'd come home with the intention of "writing" some more. 

"No wonder your shoulders are hurting, hunched over like that," my husband said as I sat at the dining room table tapping at a laptop in a distinctly unergonomic fashion.

In the morning there was the ritual of putting my son's brace on his leg and pulling him up to sit on the couch at a 90 degree angle. If I didn't take the time to lift properly, I wrenched my lower back. My husband had done this one too many times and refused to do it again, so we were no longer alternating.

"You can't keep adding more and more things to your plate," the therapist said. "You're already working full out at work and with the extra demands of your family. How about for the next three weeks you don't do any writing at night? Instead, you recover. You take a nap, or you read, or go out or do something that is completely relaxing. You take care of yourself and let yourself recover."

"Three weeks?" I said, already in a panic. "I don't think I can do it for three weeks. No, that won't happen. I'm 50 years old. Time is running out. Perhaps I can tell myself that I will pick certain days when I go home and I don't do anything at night. That sounds more realistic to me."

The therapist looked at me with a sad, knowing smile.

That night I got the stomach flu, and the next day I lay in bed, unable to go to work or do anything. It took me all weekend to recover.

A few days later I was sitting at the chiropractor's, telling him my sob story about my shoulders and neck. And it was sinking in that perhaps there wasn't a quick fix to running myself into the ground like this.

Two years ago I had a similar experience of being 'forced' into slowing down when I broke my arm badly. 

I know the research showing that parents of kids with disabilities have higher rates of physical and mental health problems. 

When my neck and shoulders seize up, I start to project pain into the future. If it hurts this much at 50, how much worse might it get? That freaks me out, because I have to be there to care for my son. I can't afford to be out of commission.

So here I am, 20 years after my son was born, recognizing that I still haven't learned this lesson properly. You know, the one where they say if you don't take care of yourself, you can't take care of anyone else?

And I need to.

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'In the absence of care, medicine is dehumanizing'

By Louise Kinross

Medicine is made up of two things: treatment and care.

But patients and clinicians alike are suffering from a devaluing of care in the health system, says Kristen Slesar, a psychotherapist who works with trauma survivors. Slesar, who supports child witnesses at the Bronx District Attorney's Office, was speaking at a three-day narrative medicine workshop at Columbia University in New York.

“Treatment is the science side—the technology, the medication, the hospital bed,” said Slesar. “Medical competence has become about how many machines and tests and things we can apply. Patients need treatment. But what happens when treatment fails or the patient dies? What happens when there is no treatment?”

The other side of medicine is caregiving—“the efforts to make someone feel physically comfortable or emotionally accepting of pain or imminent death,” Slesar said. “Care is about the inbetween moments—it's about how treatment is delivered." 

The best care happens when a clinician attends to and honours the patient's story in a way that makes the person feel understood. “Suffering is not a neutral experience,” Slesar said. “There's nothing neutral about life-changing illness or injury or the shame, stigma, fear, hope, doubt and dread that go with it. Interventions [by clinicians] are either positive or negative. If the encounter doesn't add to healing, it's hurtful. In the absence of care, medicine is dehumanizing.”

Patients are consistently unhappy, Slesar said, not with the results of their medical treatment, but with the experience of receiving treatment without care.

Care—which demands authenticity and vulnerability on the part of the clinician—is given short shrift in our medical system, Slesar said. “Offering care is equated with consumption of time and providers are forced to see more patients than is fairly and equitably justifiable. When the quality of interaction with patients is seen as a function of time spent, and there is no time, good medicine isn't consistently offered.”

In addition, caring for patients is construed as “crossing into 'emotion land'—as unprofessional and subjective, as if by being authentic and compassionate we compromise our smarts and whatever we learned in medical school [flies] out the window. We deny that we are real people who are just as permeable as our patients.”

Doctors are encouraged to stay emotionally detached as a way of protecting their mental health, Slesar said.

Yet burnout in doctors is a widespread problem and doctors are more than twice as likely to kill themselves as non-physicians.

“Burnout causes mistakes and is incredibly common and is something people don't want to talk about,” said Slesar. “Burnout is a major cause of poor healthcare delivery. It's the cause and symptom of significant damage and suffering, not just in patients but in [clinicians].”

Not only are sterile medical interactions bad medicine for patients, but they hurt physicians, Slesar said. “Physician satisfaction comes from relationships with patients.”

But to have rich relationships with patients, doctors need to be able to think and talk about their own emotional reactions to working with people who are suffering.

Just as patients need a clinician to witness and help them find meaning in their experience, “we need to acknowledge who we are and what we do as providers. We need to be able to voice these doubts and fears: the sadness of the first death certificate, the embarrassment of not knowing an answer on rounds. We're loathe to talking about our fears and mistakes. We can't sit with uncertainty or fallibility.”

Writing groups for clinicians are a forum for “giving and receiving testimony, which isn't about the facts, but about the experience and the emotion” of practising medicine. “It's that we do it together,” Slesar said. “One person reaches out for a way to express and the other reaches towards to bring it in and let the person know they are not alone.”

In narrative medicine, participants read and discuss a passage from literature, then respond to a writing prompt, writing for three to five minutes. Those who are comfortable read their pieces aloud. “We hold pieces of writing out in front of us in this loving, benign ritual,” Slesar said. “We don't focus on the quality of the writing. We write about ourselves, and even if the question is about our practice, the writing is self-revealing and self-creating. We see things differently and we see different things.”

Unfortunately, efforts to 'care for the caregiver' like this are often pathologized, Slesar said. “You're accused of being weak. Or maybe you're not cut out for the job. And when you do take time to take care of yourself you feel you're being indulgent. Self-care may even be construed as immoral.”

Given the high rates of physician burnout and suicide, “nothing is more needed than nourishment for the imagination,” Slesar said. “What quality of clinician do you want to be? How can we go from the current state of affairs to something better?”

Medicine done well is a “co-construction between patient and provider, a giving and receiving. The patient ceases to be an injury or illness and becomes a person because we are a person. There is an openness to suffering by both participants.”

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Dear Compassion

I just returned from a moving workshop at Mount Sinai Hospital called Postcards from the Edge: Addressing Compassion Fatigue in Note Form. 

It was given by Ronna Bloom, the poet in residence at Mount Sinai.

The focus was compassion fatigue, the natural stress that arises in health workers caring for, and wanting to help, someone who is suffering or traumatized. 

Ronna described it as "the cost of caring for others in emotional pain, exposure to traumatic events or hearing clients talking about their trauma, and witnessing suffering without being able to improve the circumstances."

Symptoms include re-experiencing patient trauma; avoiding reminders of it; and emotional numbing.

She described empathy as the cornerstone of good care: "Opening our hearts and minds to patients." But it is this openness that also makes health workers vulnerable to compassion fatigue.

Ronna said that writing poems can be a way for professionals to "support, express, or dump what they are carrying, or to cradle or hold it." There is something about the process of writing our experience down on paper that may allow us to carry it in a different way.

This struck me as relevant to parent caregivers of children with disabilities.

Ronna had us do some writing prompts, but began by giving us these five brilliant rules:

1. Don't think
2. Keep your hand moving
3. Don't censor
4. You are free to write the worst crap possible
5. You don't have to share

I think the most important are number 1—don't think—and number 3—don't censor. Of course knowing that you don't have to share what you write frees you up to write in this way.

One of the exercises involved writing "towards someone or something, a concept."

It could be "Dear Next Patient" or "An Open Letter to Compassion." This was an opportunity to "respond to our world without sharing."

I found this to be very therapeutic. By focusing on feeling (and silencing critical thought) I put something down that helped me see more clearly how I felt.

Some participants shared their writing and the emotion felt by these health professionals as they described their caring work was palpable. "A sense of helplessness is at the core of compassion fatigue," noted one participant. 

I think these techniques can be useful for parents and hope to learn more about them.

In the meantime, I'll remember that if I feel heavy with emotion or angst, writing freely about it can release it from where it's being tightly held within my body, and allow me to see it in a new way.

This workshop was offered through the Health, Arts & Humanities program at the University of Toronto.

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When we can't take the pain away

A week ago I took part in a think tank to develop simulations that could be used to teach rehab professionals aspects of family-centred care.

I sat at a table with another veteran parent and half-a-dozen professionals and we shared personal stories about health-care interactions where communication broke down.

By looking at some of these challenges, we hoped to come up with ideas for how to share medical information in a timely, clear, non-judgmental way that was useful to the parent given their unique story.

Mona Lee, an occupational therapist at Holland Bloorview, talked about how difficult it was to tell the parents of a young child that they needed to consider a wheelchair for the child when the parents still hoped the child would walk.

It was easy for me to imagine this scenario because when my son was young there were times when I refused to let go of a dream I had for him, even when presented with evidence that it was unlikely.

What I hadn’t really thought about was how it would feel to be the professional in that interaction. Thanks Mona! Louise

When we can't take the pain away
By Mona Lee

I work with children in our integrated education and therapy program in the Bloorview School. The program integrates therapy and self-advocacy into kindergarten and Grade 1 to ready the children to be successfully included in their neighbourhood school in Grade 2.

When students come in junior kindergarten, their parents typically have big hopes that daily therapy will boost their child’s mobility. If the child has been in private therapy, the parents have often been given the idea that their child will eventually walk without assistance.

What parents often don’t understand is the degree of independence a child needs to participate in a regular school class: to walk long distances, including outdoors or on a field trip, and if using a walker, to be able to move on their own and safely, without the assistance of a therapist.

By the end of JK here there are some children who haven’t made the functional gains that would suggest they’ll have this mobility. Their parents need to consider getting the child a wheelchair. We like to plan this so that the child has the whole of Grade 1 to “work out the bumps and glitches” and get comfortable using the device they’ll use in the community school.

We know that when students move to their local school the amount of support they get plummets.

Suggesting to parents that they consider a referral to seating for a wheelchair is the most challenging talk I have with parents.

Some parents have strong spiritual or cultural beliefs that support their hope that their child will walk. These parents may do yearly journeys back to their home country, pray and engage in other spiritual activities to keep this hope alive.

They may not hold Western values about the importance of independence. In fact, they may not realize that full independence is an expectation in our neighbourhood schools. In their culture people with disabilities may not be seen publicly, so it may be hard for them to picture their child using a wheelchair in the community.

In other cases, parents may be convinced that with just a bit more practice their child will be able to build the endurance needed to manage at the community school.

Whatever the case, I always feel anxious and almost afraid to bring up the topic of wheelchairs. Part of what we learn in school is that we’re there to encourage hope, not take it away. We’re there to support and provide what the client and family needs to keep moving forward and feeling empowered and enabled.

But sometimes I feel that I’m imposing our Western values on families. This is Canada, and here a child isn’t supposed to have a caregiver with them 24/7. If they can’t get around independently, we give them a mobility aid. But maybe the family is from a culture where there is greater interdependence. Maybe that’s their only reference point.

As a professional, it’s part of my job to explain to the family the parameters the child needs to function within in a regular school, and to explain what the reality will be in terms of the lack of supports.

As human beings we relate when we can share personal stories and be vulnerable to each other, but as a clinician I’m regulated by a college with very specific guidelines. I have to maintain a professional stance and use objective wording and that part I find hard.

Some parents are able to hear what I say, and acknowledge that we’ve tried many things over the year but their child’s present function isn’t where it needs to be.

Parents may be quite tearful and emotional, but say they knew this talk was coming.

Other parents say they’re not ready to consider a referral to seating. Some will take the referral but not attend the appointment.

Sometimes parents are at different places of acceptance and need time to come to agreement.

Sometimes we need to wait and then come back and reassess the parents’ readiness. Sometimes as the child grows larger, the parents recognize the physical reality of the situation: They can’t as easily just scoop their child up to move them.

Some children may be vocal about wanting to try a wheelchair.

I think the most important thing is that I accept what I think the parents are feeling when we have this conversation. I need to work with that, and not go in there thinking I have the magic-bullet solution, because I don’t. It’s that touch of humility. I know I can’t take the pain or struggle the parents are experiencing away.

I think this is a place where families and professionals can meet. It’s a place where we both have that mutual understanding that there isn’t a quick fix.

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'Young Carers' recognizes sibs have special needs, too

By Megan Jones

Denise Clayton and her family are too familiar with hospitals: in fact, they’ve spent nine of the past 11 Christmases in one.

Denise’s middle daughter Stephanie (photo right) was born with omphalocele, a condition that causes abdominal organs to grow outside the body. Although a string of operations has long since put everything back in place, the 11-year-old has spent most of her life hospitalized.

Today Stephanie lives with intestinal failure and experiences debilitating chronic pain, which often becomes so intense that it causes her to yell and scream uncontrollably. The pain comes quickly, and with little warning: one minute Stephanie might be running and playing. The next, she’s doubled over.

The uncertainty caused by the slew of surgeries, constant hospital stays and sudden, crushing pain has been undeniably stressful for Stephanie. But, Denise points out, it has also taken its toll on a less-discussed set of family members: her other two daughters.

Sydney, 13 (centre), and Danielle, 9 (left), have learned from an early age how to care for their sister—and for themselves. Denise’s husband, Greg, often travels outside of the province for work. So when their mother has to unexpectedly rush Stephanie to the hospital, her other two children are left to take care of themselves.

“They never know when they come home if there’s going to be somebody there,” Denise says. “They don’t know who’s going to get them dinner; they don’t know who’s going to help them with their homework.”

For years, Denise’s family coped without outside support for Sydney and Danielle. Although Denise looked for sibling support, nearly all the respite and therapy services she found were designed for parents, or for the children living with an illness or disability themselves.

Then, finally, after almost a decade of searching, Denise found the Young Carers Program.

Young Carers, which launched in early 2011, offers support to children under 18 who care for family members with a disability, addiction or chronic illness. While Young Carers offers programs specifically for siblings through a program called “Sibs,” not all clients are responsible for aiding their brothers and sisters. Some help sick parents or grandparents instead.

The service is run and funded by Hospice Toronto, and offers weekly programs, drop-in services, seasonal day camps, and monthly group excursions to places like theme parks and movie theatres. It also acts as a liaison between families and schools, stepping in when children can’t attend classes or complete assignments, and helping schools adapt to fit families’ needs.

According to Larisa MacSween, the program’s manager, too often young carers’ needs are eclipsed by those of their sibling or relative with special needs. While carers may be stressed and anxious, many feel too guilty or embarrassed to ask for support when a brother, sister or parent requires extra care. Young carers also seldom get the chance to “just be kids,” as their responsibilities and parents’ commitments leave little or no time for extracurricular activities or play dates with friends.

But at Young Carers, programming blends fun activities with discussion: the idea is to allow kids a safe space and time to relax, while working in serious talks about how to better cope with stress, or how to balance their own emotional needs with those of their family members.

Larisa says one of the most important things the program does is show kids that they’re not alone. “When children find they’re connected to someone else who’s been through the same experience, that completely boosts their self-image and their self-esteem,” she says.

“Having an outlet to think about their own needs, and learning to express them, that also really gives them a big boost.”

This has certainly been the case for Denise’s daughters. She says the program has given them a sense of community and belonging. “[Young Carers] is making my kids feel like they are being heard, they are understood, they are not alone and they have a place to go,” she says.

Currently, the program supports about 100 registered children. But the idea of a young carer is still relatively new in North America. Larisa says that the importance of supporting young carers has only started to be afforded attention in the last year or so in Canada. As a result, few comparable programs exist. And with an estimated 108,000 young carers Canada-wide, many kids still go without help.

Denise believes this needs to change. She says the support Young Carers offers has helped her daughters tremendously.

“With Sydney I notice that when she goes to Young Carers, she comes home and she’s not as anxious as she typically is,” Denise says.

“They both seem to be more tolerant. Tolerant to their sister’s screaming, or not being able to do something that day, like go out and ride their bikes. After attending the program they’re more understanding.”

Recognizing that not all parents will have access to support programs, Larisa says that parents can do small things to help siblings at home. She stresses that communication is key, and suggests parents keep children up to date about the health of their brother or sister, in order to ease anxiety. She also says parents should encourage kids to speak about their feelings, and share their stresses and fears.

Most importantly, Larisa says, young carers should be commended for their work, and validated for the help they provide their families.

“When children hear ‘Hey, you’re really doing a great job,’ that alone can show them how much they are valued,” she says.

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My loving-kindness project

We bought these candles for our farm. Everything we bought for the farm had a story. We had an elegant, cream wrought-iron and marble lamp that had previously graced a funeral parlour; a 19th century, hand-made kid's bed with ropes to support a mattress instead of a box spring—we bought it on Craigslist and the owner's father had slept on it as a child; an inverted tulip lamp from the set of the movie Kit Kitteredge: An American Girl (a local antique store was run by a prop designer); and a knotted harvest table with built-in drawers from an auction where I ate the most exquisite piece of homemade carrot cake. None of these things was expensive. But they each involved an outing, an adventure, and a story.

We sold the farm—furnished—in 2010 when Ben was struggling through months of rehab. Only D'Arcy got to say farewell, bringing back one van-load of items that included the lamps and candles, some pictures and mirrors, dishware and cutlery.

Last week we picked them up from storage and suddenly there are farm memories in our midst.

Ever played Scrabble by candelight? You must try it. It's wicked.

Anything is made special with candles: meals, even homework or curling up with a book.

At the farm we had more time to enjoy the beauty of simple things like lit candles and giant pine cones and country flowers we used to adorn the table.

Now I'm lighting these candles every night as part of something I'm calling my Loving-kindness project.

A couple of weeks ago my eyes fell on this book in a display of new hardcovers: The Memory Clinic: Stories of Hope and Healing for Alzheimer's Patients and Their Families. It was the words 'hope' and 'healing' that intrigued me. I flipped to the back and read: "Although dementia is caused by some relentless brain disorders, there is meaning—sometimes even joy—to be found through the experience of it..."

Whoa.

That's a radical description for one of the most dreaded illnesses of our time. And from a neuroscientist? Dr. Tiffany Chow, a behavioural neurologist and senior scientist who runs the Ross Memory Clinic at Baycrest here in Toronto, wrote the book.

And yet her comment resonated with me, a parent of a child with disabilities.

We find great meaning and joy in raising our children—yet outsiders devalue them and consider our family situation tragic.

I bought the book.

The Memory Clinic is a practical guide for families of patients and caregivers—from how to stall the onset or progression of dementia through diet, exercise and brain plasticity, to how to support spouses or adult children caring for family members who are losing abilities or have unusual behaviour.

What I didn't expect to find was a description of how the Buddhist practice of loving kindness is key to caring for people with dementia—whether you're a family member or professional.

"Loving kindness is the practice of helping others to feel safe, loved, healthy, and at ease," Dr. Chow writes.

For patients with moderate to severe dementia, Dr. Chow recommends caregivers work with their loved one on this simple list of daily goals:

To feel safe
To feel pain-free
To participate in a meaningful activity
To feel loved

She notes that these goals are an application of the Four Intentions of Buddhism, which she addresses before discussing more traditional drug or behavioural treatments.

In a description that reminded me of how parents like me can get tied up in 24/7 'fix-it' therapy with our kids, Dr. Chow writes: "I will frequently prescribe time for the caregiver to let go of the nagging, quizzing, coaching role, in order to achieve a sense of calm stillness with a loved one. I can't imagine how awful it would be to see dismay over my every failure on the face of a companion."

I've often wondered in retrospect how it felt to be my son Ben, urged and cajoled to speak by me, therapists, school teachers and assistants, friends and family, when he simply didn't have the mechanical ability. For years!

How would it feel to always be put in a position where you can't be successful? To have the focus put on what you aren't, instead of what you are—when what you are is a rich world waiting to be seen and accepted?

Last night I sat beside Ben on the couch. He was watching Jessie in Toy Story recount her sorrowful story of being abandoned by a child who grows up.

"Is this the sad part?" I asked? He nodded. Then he leaned in close so I could feel his body. I just sat there, enjoying the warmth. At the end of the day, is there anything more important in life?

Another gem offered by Dr. Chow: "To experience joy and love does not require perfect cognitive function." (Or any other ability or physical characteristic, I would add!)

Much of The Memory Clinic is about helping caregivers look after themselves. "Extending loving kindness toward oneself is one of the most vital survival tips I can pass on...," Dr. Chow says. "It trumps teaching... how to pronounce the generic names of medications."

She notes how caregivers are exceedingly hard on themselves (bingo—doesn't this ring true for parents of kids with disabilities?)

She stresses that respite and self-care (including exercise, healthy eating, strong social ties and interests) are essential in allowing caregivers to ride the ever-changing journey they're on.

I've been feeding my worry recently with overeating of homemade cakes with butter icing, chocolate-covered almonds and the like. A few weeks ago while riding the hospital elevator a woman asked me: "Are you pregnant?" This sent up a red flag.

Dr. Chow recommends a Mediterranean diet as a way of reducing the risk of Alzheimer's, so I went and bought a cookbook of Greek recipes—many of which are for fish.

Last night I made a roasted fish dish with cherry tomatoes, red onions and white wine.

I thought it was very tasty.

"Please don't include me as a candidate for further explorations in this area," said D'Arcy, after taking a couple of bites.

The front door slammed.

"Mom, I HATE fish! Why did you make fish?"

"Just try a tiny piece. It's different, you might like it. And it's good for you."

Stomp, stomp, stomp. Backpack hitting the floor. Pot banging on the stove. Frozen cheese tortellinis—ping ping ping—being dropped in the pot.

Ben, however, was quite enthusiastic and finished his plate by signing "good" with great relish.

In addition to the new cuisine, I've gone to the club two days in a row now and resisted my daughter's baking. Bought a pack of cards for more letter writing. And have my eye on a play.

Last night I surprised myself by saying: "Today was a really good day."

And as I bobbed around the kitchen this morning, laughing at things on CBC Metro Morning that seemed oddly funny (but only to me!), D'Arcy turned and said: "I know you're trying to be happy. But it's a little annoying."

I think parents of children with disabilities have a lot to learn from families caring for people with dementia and vice versa. As Donna Thomson, author of The Four Walls of My Freedom often says, we need to speak as one powerful caregiving voice.

Loving-kindness project Day 3. Here I come!

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Empathy, not productivity, defines us, geophysicist says

Xavier Le Pichon is a world-renowned geophysicist who helped create the field of plate tectonics – discovering that the earth’s outer crust is made up of plates of rock that continuously shift all over the globe.

While developing his scientific theories, he lived with his family and raised six children in the original community of L’Arche in Trosly Breuil, which brings together adults with intellectual disabilities and young adult volunteers known as assistants.

In the next BLOOM, I interview Le Pichon about the value of weakness and fragility – whether in the earth’s rock or in people and communities. Here's a sneak peek:

BLOOM: In a recent interview, you said that fragility and empathy are what define us as people. This is different from the philosophers who said cognitive ability makes us human, or from values today that associate worth with money, social status or physical strength.

Xavier Le Pichon: What I discovered is that the major difference between human societies and other societies of living beings is that humans have a capacity for empathy, which leads them to take care [over the long-term] of those who have been affected by major suffering and handicaps.

I was very impressed by studies of skeletons of 100,000-year-old humans which demonstrated that these people took care of heavily handicapped people [for decades]. This is most remarkable as these people were nomad, hunters-gatherers who lived in groups of 20 to 25 people at most.

Since then, [I’ve tried to answer this question]: What motivated these people to permanently change their [way of] life to take care of a crippled man who could neither walk, nor feed himself? It appeared to me that the most revealing aspect of human societies was that they take care of those who – when considered on the sole basis of immediate utility – appear to be “debris” that should be discarded.

Taking care of fragile and vulnerable individuals has revealed to humans [our] own fragility and vulnerability. We have come to see that [a person's] importance in the community is not only and primarily related to productivity, but to the tight network of relationships, of emotions, and more, deeply, of love, that is woven around that person. These affective bonds are created through everyday common life. Think for example of the place that an infant occupies within a family. This place is not related to the baby's productivity or the hope that he will one day be productive. It is related to the love that [grows] out of the relationship with him.

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