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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Study links high-needs children to increased death risk in moms

By Louise Kinross

Mothers of children born with major anomalies like heart disease or Down syndrome had a 27 per cent increased risk of death when compared with mothers of children born healthy, according to a population-based study published in JAMA last month.

The researchers identified over 41,000 mothers in a Danish registry who had a baby born with major anomalies between 1979 and 2010. They matched each mother with 10 mothers of the same age who had unaffected babies the same year, then followed the two groups to 2014 to compare mortality. After a median follow-up of 21 years, 3.1 per cent of the mothers of infants with anomalies had died at a mean age of 49, compared to 2.4 per cent of the mothers whose children were not affected.

“I think the results are troubling,” says lead investigator Dr. Eyal Cohen, a pediatrician at SickKids Hospital. “The absolute risk to a given individual is not high, but on a population level, a small increased risk multiplied by thousands of people is much more substantial.” BLOOM interviewed Dr. Cohen.

BLOOM: Why was there a need for this study?

Eyal Cohen: Parents who look after kids with serious health issues report that it’s extremely stressful, and we know from previous surveys of mothers in particular—because they’re generally the primary caregiver—that they report their own physical and mental health as poor. But no one had ever looked at mortality.

BLOOM: In your study you reference research showing that this type of parenting can cause premature cell aging.

Eyal Cohen: Yes. One of the papers I cite was from a Nobel Laureate who was the first person to discover telomeres and their association with premature aging of cells in the body. When I went back to read her original research, I was surprised to find she was studying mothers of children with severe health issues. So there’s a biological basis for this and also reports from people of poorer health outcomes.

BLOOM: What kind of conditions did the children in the study have?

Eyal Cohen: We looked at two groups: those with anomalies affecting one organ system like heart disease and those with multiple anomalies, like a child with Down syndrome and a heart defect. The reason we decided to focus on congenital anomalies is that they’re clear cut—you either have them or you don’t. They’re easily diagnosable and happen at a fixed period of time, whereas disability can be more gradual. We wanted to test our assumption that caregiving stress was associated with higher mortality risk. We anticipated that mothers looking after sicker children would have more of this outcome. But I have no reason to believe that the findings wouldn’t be generalizable to a broader group with disabilities.

BLOOM: What was the main finding?

Eyal Cohen: We found there was an increased risk of dying of 27 per cent in mothers who gave birth to babies with major anomalies, compared with mothers of the same age, with the same number of previous births, who had unaffected children born the same year. When we adjusted for factors such as the mother having health problems herself, the difference was slightly smaller, a 22 per cent increase. The increased risk of dying in mothers with more severely affected babies was 31 per cent. One thing that surprised us was that we saw this effect even within the first 10 years after delivery, and the same effect continued downstream.

BLOOM: What types of diseases did the mothers die of?

Eyal Cohen: There wasn’t one cause of death. We did find a fairly substantial increased risk of dying of a heart attack, and heart disease has been associated with chronic stress. The mothers of children with anomalies had a 97 per cent increased risk of dying of a heart attack compared to the other group. There was only a slight increase in risk of cancer, which is not thought to be triggered by stress.

BLOOM: So what does this mean for mothers raising children with complex needs?

Eyal Cohen: Their relative risk of dying of a heart attack is almost twice as high, but at an absolute level, heart attacks are not common in young women. So the overall risk isn’t huge. If a woman has a child with a major anomaly, it’s not likely that she’s going to die prematurely. But on a population level, a small increased risk, multiplied by thousands of people, is much more substantial.

BLOOM : Your study says that the clinical importance of the increased risk of death is uncertain.

Eyal Cohen: This is one paper and I don’t want people to think causality is proven with one paper. The evidence is compelling and troubling.

We often put the words maternal and child health together, and we know that if mothers are healthier, it will make their children healthier. But we spend a lot less time, particularly in health policy and support, on the concept that an unhealthy child can affect the health of a parent and family.

We don’t have a lot of programs and supports and funding dedicated to these families. I look after many families of children with disabilities and other complex health needs and it’s not infrequent that we have to address the parents’ health, and that is not easy to do. We need to see if what’s true in Denmark is true in Canada, and develop evidence-based interventions to see if we can attenuate these outcomes.

BLOOM: Your study notes that families of children with health problems in Denmark have extensive health and social supports.

Eyal Cohen: You’re correct. I would expect you would see the effect more here, where the supports are generally not as great.

BLOOM: You refer to research of senior caregivers that shows that sometimes the caring protects the health of the caregiver. Why would this be different in parent caregivers?

Eyal Cohen: I think there’s a substantial difference in how we think about caregiving in seniors as opposed to pediatrics. When an elderly person gets ill, their caregivers generally have a choice. They can care for their loved one at home or put them in a facility. But with children, we have a societal expectation that they’re raised by their families—for all the right reasons—and it’s rare that a parent of a disabled or very ill child puts them into care. Mothers do most of the caregiving and they don’t have choices in these matters—that’s an important part of it.

The duration of caregiving is also much longer. And there’s extraordinary trauma associated with the discordance between either societal or personal expectations of what caregiving of a child will be like. It’s not a societal expectation that one will raise a chronically ill or dependent child.

There are also differences in that generally the scenarios we studied were highly unexpected. Most women go into a pregnancy expecting a healthy birth. But while there can be a catastrophic event like a stroke for seniors, often there’s a bit of forewarning that a dependent older person’s health is declining.

BLOOM: It’s frustrating as a parent to know of these increased health risks, but not see more research into how we can reduce the risks.

Eyal Cohen: Some of the questions we discussed still need to be teased out—mechanistically, locally or contextually. But I think I agree with you that the direction of this work needs to move on the intervention side.

We need to look at more intensive psychosocial and mental health supports, especially during times of extreme stress—at diagnosis or transition from hospital to home and across different life stages. We are trialing mindfulness interventions for families being discharged from our NICU after months of being in an extremely stressful environment.

Caregivers are so busy that it wouldn’t surprise me if they don’t have time to get their own primary health care and screening. Do we need an adult health clinic embedded at Holland Bloorview or SickKids, where parents will be seen at the same time their children are seen?

BLOOM: That sounds like a fabulous idea! It’s similar to the program at SickKids for teen mothers where they combine health appointments for the mother and baby.

Eyal Cohen: We also need to look at high-level policy. There’s work showing that families of children with complex needs get poorer over time. We need to rethink parental leave and disability taxation policy.

BLOOM: What advice would you give mothers reading the study?

Eyal Cohen: I look after many of these kids and there’s a subgroup of parents who have extraordinary resiliency. It blows me away how resilient many families are. I would advocate that we use strength-based approaches to thinking about this. How dedicated a family is to a child can be a good and extra positive experience. But particularly for those families who are struggling and find it a battle, they need to be attuned to their own health and seek out health care. At this point, unfortunately, our system isn’t set up to screen parents for that. Until that happens, caregiving mothers need to be attentive to both their stress and their health.

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Two moms, one ill baby, and the best care

My dear friend Janis Purdy is speaking today on a SickKids panel celebrating PRIDE week. Here she writes about parenting a child who was born with serious medical problems and the hospital care—often kind and empowering and sometimes challenging—she and her partner experienced as two gay moms. Thank you Janis! Louise

By Janis Purdy

I remember all the people and intensity in the room when Jonny was born. I remember him being whisked away from me and wondering if I would ever hold him.

I remember touching his hands and feet. I remember his omphalocele looking bigger than his body. I remember his curved spine, his yellowish pallor and his old-soul eyes.

I remember his isolette, his PICC line, his NG tube, the IV in his head, his wound dressings twice a day. His daily dose of medications. His failure to thrive. I remember infections and green bile and TPN.

I remember a spontaneous bowel perforation. I remember emergency surgery. I remember praying desperately. As Anne Lamott writes, all my prayers were either “Help”, “Please” or “Thank you.”

I remember six long months in the NICU.

I remember two open heart surgeries, chylothorax, chest tubes, pain in his eyes, and a hernia surgery. I remember three months in the cardiac intensive care unit. I remember the NJ tube, low tone and the discharge plan.

I remember all the good, smart and kind people. I remember the sharp looks, the insensitive comments, the mistakes.

I remember leaving Sick Kids. I remember being so happy and so scared at the same time.

I remember emergencies and admissions and back and forth and in and out for a year. I remember feeds every three hours around the clock and dressing changes and meds that got stuck in his tube and I remember being very tired.

I remember his abdominal closure surgery. I remember a nurse in the surgery recovery room bringing him a brand new Thomas the Train toy.

I remember little friends who got better and some who didn’t.

I remember how much Jonny always loved his big brother. From the moment they met. And I remember his remarkable will to live and his incredible spirit of life and love.

I remember OT and PT and speech and language and oral aversion. I remember being completely humbled by Jonny’s strength and endurance.

I also have different memories that relate to today’s topic: Insights and Ideas for Creating an LGBTQ Positive Space at SickKids.

I remember growing up being taught that lesbian and gay people were dangerous to children. And that trans people were mentally ill. I remember a lesbian who lost custody of her children when she came out. I remember hiding and covering up and feeling ashamed.

I remember a nurse in the NICU asking if Diane and I were married. I remember that opened a door to a lovely conversation.

I remember a nurse practitioner in the NICU asking me, of my older son, “Does he call you mommy or mama?” It showed a wonderful level of insight.

I remember introducing our children’s biological Dads to the staff, and their grandparents, and their aunties and uncles of all genders and being amazed at how nice they all were in trying to understand and support our unconventional family.

I remember the receptionist calling Diane, Mr. Purdy once. She was so apologetic when she realized her mistake. Like red-faced and tripping over herself. I felt sorry for her. I began to call Diane Mr. Purdy after that as a joke.

I remember an older nurse sharing that she was gay too. That was nice and it helped us feel understood and comfortable. I appreciate that she shared that confidence in us.

I remember a younger nurse discussing the finer angles of lesbian motherhood with us.

I remember a GI doctor we’d never met before. We were not having a good day and he walked into our room without knocking, as they are want to do. “I’m Doctor X” he said looking between us. Then he asked, “Who is the mother?” I responded “We both are.” He seemed irritated. “Who is the BIOLOGICAL mother?” Instant tension. My partner tried to diffuse it with a joke “It sounds amazing but we both are!” He looked at her without smiling. “Who are you and why do you need that information?” I said. Sound of horns clacking. “There are many medical reasons we need to know who the biological mother is.” That was a bad start. Hard to get over a bad start.

I remember a social worker in the cardiac ICU asking us the kindest, most thoughtful questions about our family situation. She was concerned about whether we had enough support going home. Gender was not an issue.

I remember sometimes feeling angry at the world and dark and ready for a fight.

I also remember feeling so lucky and thinking, if anyone can handle this, we can. With our age, our experience, our families, our friends, our financial security, our good health… we’re going to be able to handle this. I remember thinking, Jonny chose the right family. And feeling so grateful.

I remember meeting moms and dads from all over Ontario, from little towns here and there and some who were very religious and some who had never met a lesbian before but it was all okay because here we were all surviving and hanging in there together. It was all about the kids and the diagnosis and the treatment and the prognosis.

I met people at SickKids, and made friends here, with people I’m not sure I would have crossed paths with in any other way. And that was good for me.

I remember a doctor here, someone I deeply respect, and will always love in a kind of hero-worship way, telling me that he thought Diane and I were great parents. I think I burst into tears, which would have been disconcerting for him, but that is how much I appreciated what he said.

When you grow up thinking you can’t or won’t be a parent, or you’re holding onto an ancient fear that other people will judge you, or dislike you before they’ve met you, or when you’re used to fighting and you’ve got your dukes up for no good reason, those little compliments and small indications of care, and empathy, well they can blow up your well-constructed walls and bring down all your defenses and really soothe your soul. Which is a really good thing for any parent of a sick child.

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Note to self: Protect my mind

By Louise Kinross

A new study shows that parenting kids with disabilities over a long period of time jeopardizes cognitive function—especially memory—in mothers, but not in fathers, due to chronic stress.

The study—published in the Journals of Gerontology: Series B last month—used a large U.S. survey of parents from 2004 to 2006 to compare 128 parents raising disabled kids with 512 parents whose children did not have disabilities. The children with disabilities had autism, cerebral palsy, Down syndrome, attention deficit or intellectual disability.

Parents were tested on verbal memory and fluency, mental processing speed, reasoning, working memory and ability to switch their attention. Researchers also assessed parents’ physical and mental health, physical activity, social support and “negative parenting experience.” To determine the latter, participants were asked to rate how true six statements were for them. For example, “I feel good about the opportunities I have been able to provide for my children” and “problems with my children have caused me shame and embarrassment at times” and “it seems to me that family life with my children has been more negative than most people’s.”

Interestingly, at a younger age, mothering a child with a disability was associated with better performance on memory tasks, but by age 60 the pattern had reversed itself. Mothers who had higher levels of “negative parenting experience” were more forgetful, leading researchers to conclude that chronic exposure to parenting stress predicted cognitive decline for mothers of children with disabilities. Seventy-six per cent of mothers of kids with disabilities reported significantly higher levels of negative parenting experience compared with 46 per cent of the comparison group mothers.

The study found that mothers of children with disabilities tended to be much more depressed, less physically healthy and to feel less in control than mothers without disabled kids. They also had more problems handling their kids and less support from friends than women whose children do not have disabilities (yup, we’ve seen parent isolation in other studies about raising kids with disabilities).

Mothers with a strong support system, a sense of control and a history of regular exercise had better memories than those without.

This point is critical. “Keeping quality friendships, sense of control for life and [a] physically active lifestyle would help to protect these parents from accelerated cognitive aging,” said Jieun Song, a researcher at the Waisman Centre at the University of Wisconsin-Madison, who led the study.

I classify all of these things under the header “self-compassion.” In her new book Parenting Through The Storm, Ann Douglas says being kind to yourself in the way you would treat a friend is one of the best things you can do to support a child who is struggling (see this recent blog post). I know, it's counter-intuitive, isn't it?

But still, if you’re a mom of a child with disability, you’re probably thinking: “Oh great. Now, to add to my never-ending “to-do” list, which includes taking my kid to therapy and multiple specialist appointments, doing therapy exercises at home, advocating at school and in the community, making my home the ‘funnest’ place for playdates on the block, and doing my child's bathing and physical care, I need to step it up by going to the club regularly and being a social butterfly. To be honest, I’m not sure how you go about increasing number 3 in the study—the sense of control you have over your life! Isn’t that an illusion? Ha ha! But I digress.

So, how do you find the time and energy to get fit and healthy and socially connected when you’re already running flat-out 24-7 with your kid with special needs?

Today I heard Gretchen Rubin, author of The Happiness Project and Better Than Before: Mastering the Habits of our Everyday Lives, give a talk at the University of Toronto’s Rotman School of Management.

Gretchen spoke about her new book on habits—how we can develop good ones and break bad ones. I think we moms of kids with disabilities can benefit from some of her research and tips.

Good habits are “freeing,” Gretchen said, “because they eliminate decision-making and self-control” (in the case of the latter, if you’re like me you’ll find yourself lacking). Gretchen noted that if you’re in the habit of going to the exercise club at 6 a.m. every morning you don’t think about it, and you don’t fret about it, you just go.

So why is it so hard to drop bad habits or develop ones that we know would make us happier—or, in the context of the study on cognitive aging in moms of kids with disabilities, protect our brain power?

Because we don’t all have the same aptitude for forming habits or the same attitude towards them, Gretchen said. There isn’t one solution that works for everyone. “It’s important to figure out what kind of person you are” because that will determine which of 21 strategies, or a combination thereof, may work for you, she said.

One approach I think we mothers can try to help us work into our schedule habits that keep us physically and mentally healthy is called the “strategy of four tendencies.”

This is about how we deal with expectation—both outer expectations, like a work deadline, and inner expectations—and varies from person to person. Gretchen said we tend to have four responses to expectations. “Upholders” readily respond to outer and inner expectations and see them as equally important. “Questioners” will meet expectations if they agree they make sense. They hate arbitrary demands and need to turn an external request into an internal expectation to make it work. “Obligers”—the most common style, and certainly mine!—meet outer expectations well, but struggle to meet inner ones. Finally, “rebels” resist all expectations.

In talking about “obligers,” Gretchen noted that we’re often dissatisfied and frustrated because we’re so good at meeting other people’s demands but so bad at taking care of ourselves. To reverse this, we need to create “external accountability” for being kind to ourselves. That could mean paying for a class or coach, creating an accountability group with friends or similarly-minded people online, or coming up with funny ways that force you into good habits.

For example, friends who want to help each other work out regularly switch shoes at the end of their workout so they “have” to return for their next scheduled workout (otherwise the other person can’t exercise). One woman who wanted to get up at 6 a.m. every morning programmed Hootsuite to post an embarrassing message about her on Faceboook at 6:15 unless she got up and disabled it. Someone who wants to read should join a book club.

I think we moms of kids with disabilities should band together to create habit groups (except with a much cooler title)—perhaps online—where we encourage each other to do healthy things a certain number of times a week. What do you think?

Gretchen also shared other habit strategies.

For example, if you’re an “abstainer,” it means you do well when you give up a bad habit “all together.” This means not purchasing Haagen Dazs at the grocery store or keeping Hershey’s kisses in your office desk and deleting Candy Crush from your iPad.

Another tactic involves giving yourself “healthy treats. When we give ourselves healthy treats we energize ourselves and feel comforted,” Gretchen said. Stay away from food, drink and shopping in this category, and instead, be imaginative: listen to a favourite podcast or buy yourself some music.

When developing good habits, it's useful to consider goals as “milestones” rather than a “finishing line.” For example, many people commit to training for a marathon, then stop running. “That’s because the idea of the ‘finish line’ disrupts the habit,” Gretchen said. “You have to start over, and that’s hard.” So instead of telling yourself you have to lose 20 pounds, tell yourself you need to eat healthy forever.

Gretchen says “outer order contributes to inner calm” so use her one-minute rule to reduce clutter. If you can do it in less than a minute—hang up a coat or put some papers in the recycling, for example—do it. Instead of feeling you have to overhaul your entire house, “do it one minute at a time.”

Finally, “the strategy of convenience” involves making healthy things convenient, and unhealthy things inconvenient. For example, disable one-click shopping and put your cell phone in a closet instead of in your back pocket. “To change a complex habit you may need to use three to five strategies,” Gretchen said.

If you want to get a copy of a starter kit to help you begin a habits group with others, where you encourage each other, e-mail Gretchen at grubin at gretchenrubin dot com.

I know I'm going to!

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Peer-led groups treat distress in moms of kids with autism

By Louise Kinross


Parent-led groups in mindfulness meditation and positive psychology significantly reduce stress, depression and anxiety in mothers of kids with developmental disabilities like autism, according to a July 21 study in Pediatrics.

Two-hundred and forty-three mothers—65 per cent with children with autism and the rest with other developmental disabilities—were randomized into either a Mindfulness-Based Stress Reduction group using breathing exercises or a positive psychology group that focuses on cognitive exercises like curbing negative thoughts and practising gratitude.

Six weekly, 90-minute sessions were run by mothers of children with disabilities. They received four months of training and were supervised.

At baseline, 85 per cent of participants had significantly high stress, almost half were clinically depressed and 41 per cent had anxiety disorders.

Both treatments led to significant reductions in stress, depression and anxiety and improved sleep and life satisfaction. The drops in depression and anxiety were large. Mothers in the mindfulness group had greater improvements than those in the positive psychology group. Only one treatment difference was seen in the disability groups: Mothers of children with autism improved less in anxiety. Mothers continued to improve or maintain gains during a six-month follow-up.

Researchers suggest that further research should look at groups that incorporate aspects of both mindfulness and positive psychology.

“Our research and findings from others labs indicate that many mothers of children with disabilities have a blunted cortisol response, indicative of chronic stress,” says lead investigator Elizabeth Dykens, director of the Vanderbilt Kennedy Center for Research on Human Development and professor of psychology. They also have reduced immune function and shorter telomeres—the protective cap on the ends of strands of DNA—which indicates speeded up cellular aging.

“Compared with mothers of typically developing children, mothers of children with neurodevelopmental disabilities experience more stress, psychiatric problems and poorer health,” the researchers say. Although the “cumulative stress and disease burden of these mothers is exceptionally high…policies and practices primarily serve the identified child with disabilities.”

The researchers call for more research on how trained peer mentors can work with professionals to address unmet mental health needs of mothers of children with developmental disabilities.

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The trove of other mothers

Sandra Stein’s life was upended when her healthy toddler fell ill with an autoimmune encephalitis, a condition in which the immune system attacks the brain, and was hospitalized for 15 months. In this poem, Sandra invokes and honours the many other mothers she has met in hospitals and in cyberspace who every day are caring for children with complex medical needs.


The trove of other mothers
By Sandra Joy Stein

I.
Cradling her son
As his body thrashed
Legs like iron rods.

Try to bend them, honey,
Tell your legs what to do,
They’re your legs.

It will pass, she said, again.
It always passes.

After minutes or hours—she was never sure,
He calmed. Curled. Gazed into the void.

She gazed too.

A giant tear startled her, when it fell on her arm.

Was that his tear or hers?
She preferred not to cry while holding him.

Then another tear, this time most definitely hers
And another.
And another.

He was limp, motionless, breathing, heavy in her arms.

She surrendered.

More tears. Her arm now wet.

He fell asleep. So peaceful. So beautiful. If you didn’t know, you wouldn’t know, she thought. She loved to stare at him while sleeping.

Rest, she said, her palm to his cheek. You rest.

She called out—no, not to some doctor or deity—she called out to the trove of other mothers who at this very moment were, like her, cradling sick babies, and grown babies, and limp and lifeless but very much alive babies.


II.
From behind shadows and tucked away spaces and homes-made-hospitals and hospitals-made-homes
Their forms emerged
Weathered hands, kinked necks, crooked backs, heavy eyes, furrowed brows.
They looked right at her in a way that no one had since…

We see you.
We feel you.
We know you.
We are you.

Like a somber gospel choir they swayed and sang,

No, sister, you have not failed
No, sister, this is not fair
No, sister, you are not alone
Never alone. Never alone.


III.
She blinked back to her sleeping son.
Her arm, now dry, she dug
deeper, yet again.

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Goodbye mom, hello therapist

A Ryerson study of 20 mothers of children with autism looks at how mothers sacrifice their roles as parents, spouses, friends and professionals in order to become full-time 'therapists' to their children.

"Parents are talking about this, but it's still not highlighted in the literature," said Dr. Nancy Walton, an associate professor at Ryerson's School of Nursing and ethicist who was speaking at a Bloorview Research Institute presentation yesterday.

Through qualitative interviews with 20 women, most of whom identified themselves as their child's primary therapist, Walton uncovered the following themes:

While professionals tell parents early intervention is key, an autism diagnosis typically meant that publicly-funded therapies were cut off, and the child was wait-listed for services. One mother noted that in order to get her child help at the age of four, he would have had to be diagnosed in utero. Another said that her non-verbal child had been on a wait list for speech since 20 months. He remained high on the list and was about to turn five.

Mothers took on the role of active therapist because publicly-funded therapy was rationed in inconsistent blocks or non-existent and they felt time was running out; they saw their child as a unique individual that they knew best; and through networking they heard about positive results from other parents who delivered most of their child's therapy. A therapist who wasn't able to provide the amount of therapy the child needed would offer to 'train' the parent to do the therapy at home. In addition to therapists, mothers viewed themselves as case managers in co-ordinating their child's team of physicians, specialists and therapists. Fifteen respondents did not work outside the home and a number described therapy as their new 'career.'

In order to deliver a gruelling 48 hours of therapy a week, moms integrated therapy into their everyday life, often dedicating a room in the house to the task. Interaction with their child no longer involved any 'down-time.' Every activity became purposeful and therapeutic, "making it difficult to be a mom," Walton said.

Respondents described their therapy role as more than a full-time job. They felt guilty if they weren't teaching their child every waking hour. The moms reported exhaustion and an inability to fulfill their role as spouses and to provide any one-on-one time to their other children. The respondents had no social life outside the home and considered their child's therapy their work life.

On a positive note, doing therapy often gave the moms the first effective way to interact with their child and when their child made progress, they felt rewarded.

The respondents identified the lack of resources to help mothers address exhaustion and take care of themselves.

They felt decisions about services and cut-off dates were arbitrary and ad-hoc. Walton, after analyzing the data, expressed concern for vulnerable mothers of children with autism who were new Canadians, didn't speak the language, had low literacy, or were single parents or isolated.

Dr. Evdokia Anagnostou, a neurologist and clinician scientist who focuses on autism at Holland Bloorview, asked whose mandate it was to protect the mental health of parents given the high levels of stress.

Walton said that the mandate may fall within our commitment to delivering family-centred care.

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20 questions

My son Ben's genetic deletion happened as a random error at conception.

The way a researcher described it, when my chromosome 8 -- let's call it a green ribbon -- exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped ribbon, a minute piece was left out.

Early on, I found giving detailed histories of my pregnancy painful. Although I'd been told Ben's condition was a random or 'spontaneous' change, I didn't know a lot about it.

So when I was asked whether I had taken prescription drugs, drunk alcohol or experienced 'stress' during my pregnancy, and then was asked all kinds of questions about the actual birth -- including whether he needed oxygen -- it was hard not to feel in some way implicated.

Last week, I was stunned when I did an intake interview with an agency, and was asked the same questions!

I explained that Ben, now 17, had a genetic deletion that occurred at conception -- so I wasn't sure why I was being asked about my pregnancy and delivery. The cause of his disabilities was known and wasn't related to anything I did or didn't do during pregnancy.

The intake person explained that they wanted to learn more about the causes of intellectual disability (I repeated the above, but the person didn't seem able to process it -- or perhaps she was just following orders about filling out the forms).

So we went through a detailed pregnancy and delivery history again. Whenever I was asked a question about something I did or didn't do, or the circumstances of Ben's birth -- and the person took down detailed notes -- I followed by saying: "But the genetic condition was caused at conception. It had ALREADY happened!"

How is this pregnancy information used? Will someone who understands the mechanics of a genetic deletion read it?

Should someone who doesn't understand how a genetic condition occurs be asking questions about my pregnancy?

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A weekend escape

Joanne Barker wrote to me about a Moms' Camp run by Easter Seals in London, Ontario. "I'm a mom of a special needs child and I can say honestly that the Moms' Get Away Weekend is the one real break I get every year. It really is a chance to connect with other moms that have 'been there.' We let loose a little, get the much need rest we've been missing and build friendships that last."

It sounds like this model would also work well for dads!

Here are a few more details from Joanne:

As a mom, you know that there's never enough time in a day to get all the things done that need doing. As the mom of a child with special needs, that sense of pinching time is only heightened. Between medications, appointments and life, your day may start at dawn and end well after midnight. A break never comes -- not that you regret it cause you love your kids -- but burning out always hovers in the offing.

Moms' Camp is exactly what it sounds like -- a quick getaway for Mom. It starts on a Friday evening and for two glorious days moms who spend 24/7 caring for a child with special needs get a chance to not cook, not plan, not worry and not clean.

Moms' Camp is a-once-a-year chance to enjoy a weekend of rest, relaxation, idea sharing, networking and life experiences with other Easter Seals moms. There are organized activities or you can just sit by the pool, read a book or rest. There's no obligation to participate in activities.

What you're going to find at Moms' Camp is friendships you weren't expecting, people who understand what you're going through, a sizeable support network, and that much needed rest that allows you to be the very best.

This year's camp runs June 10-12 at Woodeden Easter Seals Camp in London. Space is limited to 70 moms and the cost is $70. While the camp is primarily for moms whose children are registered with Easter Seals, all mothers are encouraged to apply.

For more information, click on this registration form or e-mail Joanne at jbarker@trebnet.com.

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