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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.

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.

Self-care: It's not a frill!



Parents of kids with special needs know what it's like to live with chronic stress. Amy Baskin became one of those moms when her younger daughter was diagnosed with autism 14 years ago. As she traipsed from specialist to specialist, she noticed she looked like all the others moms in the waiting rooms: exhausted and overwhelmed. She searched for a book that would help her take care of herself while she tried to get the best help for her daughter. But she couldn’t find one. So she wrote More than a Mom: Living a Full and Balanced Life when your Child has Special Needs.


With co-author Heather Fawcett, Amy surveyed over 500 North American moms of kids with special needs, looked at research on families of kids with disabilities, and spoke to health and career experts about how mothers can hold onto their physical and mental health while navigating the demanding and often unpredictable world of child disability.


Look for a full interview with Amy in the June print issue of BLOOM. Here, we talk about why balance is critical – yet often elusive – for moms of kids with special needs, and what you can do to take the first step.


BLOOM: Why did you decide to write this book?


Amy Baskin: When I was first searching for ways to help my daughter, I never heard about resources and supports for me as a mom and a professional. I had this fantasy that when your child is diagnosed, you'd be told: "Here is a plan for your child. And here is your personal life coach, fitness coach, career coach, and the person who will help with your marriage and make sure everything is on track." Those coaches didn't exist, so we wrote the book.


BLOOM: What does research tell us about the unusual stresses that come with special-needs parenting?


Amy Baskin: We looked at old studies and the most current ones, and one thing they find over and over again is that challenging behaviour is most stressful. Physical and medical care isn’t easy, but from a stress point of view, behaviour is a huge issue. Then there are the multiple roles mothers have. Even if the mom is working full-time, she’s usually doing all the case management: booking the appointments, managing the child’s care, dealing with the school, managing behaviour, doing the emotional work. The Roeher Institute found that moms put in an average of 20 to 30 hours of personal care for their special-needs child on top of workforce and other family and household responsibilities. With that extra load comes little time for self-care. And no matter how positive we are, we all worry about what will happen in the future, when we’re no longer there for our child. So there’s too much to do, lots of stress, worries about the future and a lack of control. One study found that parents of children who are chronically ill have cellular content that is like a person 10 years older; stress ages them at a cellular level. The other big contributor to stress is that daily life in our community is designed for a typical kid. If I want to send my typical kid to camp, I phone the camp, get the information, fill out the form and away she goes. If I want to send my special-needs child to camp, it starts with: Let’s do the research. Let’s meet with the director. Let’s find a one-to-one worker. Everything we do has so many more layers to it.


BLOOM: What is the difference between coping and balance?


Amy Baskin: Moms of children with disabilities have more intensive and frequent periods of crisis. It could be your child’s medication isn’t working, or your child has become depressed, or you’re dealing with chronic behaviour. When we’re in crisis, we just cope. We need to get some sleep, to eat, and to have a friend to connect with. But there is no balance. Balance is what we do over time to maintain our physical and mental health because we know the parenting demands are greater and we’re at risk of depression. Balance is about looking after our physical health – sleeping, eating and exercise – and what makes us happy: knowing what you love to do and being able to do it, and having friendships and social connections.


BLOOM: What happens if we don’t pay attention to our own needs?


Amy Baskin: The stresses start to outweigh the joy and meaning we get from our child. We become negative and bitter. Then we have nothing left to give to our kid.


BLOOM: What did you find in moms who coped the best?


Amy Baskin: Their child with special needs was not the centre of their entire family’s life, which is really hard to achieve. Every single decision wasn’t made in light of that child with special needs. The happiest moms often had some kind of paid work. When they returned to work, their life felt more balanced and they had another world outside of their kids. Going to work was a break – a time to free their brain from thinking about their child and to get energized before coming back to the family. Moms who did best were involved in committees and groups that were changing the world to make things better for their kids. They also tended to exercise and there’s all kinds of research on how exercise can boost your energy and mental health. Moms who coped well used humour and took breaks. They went on dates with their spouses, booked child care so they didn’t feel they had to do everything themselves, and surrounded themselves with help – whether extended family, other parents of kids with special needs, or by using funding to hire university and high school students.


BLOOM: Why is it so hard for moms of kids with special needs to take time for themselves?


Amy Baskin: Guilt is a major barrier. I remember one woman at a workshop said: “I can’t even buy myself a cup of coffee because I know that money could go to my kid’s therapy.” People feel guilty leaving their child with someone else. Our society is so focused on helping the child that if a mom does something for herself, there’s a sense that she’s taking away from her child. The opposite is true. We know we have to fill ourselves up first, before we can give to our child. The better you feel physically and mentally and the happier you are, the more you’ve got to give your kids. Balance is not just a frill!


BLOOM: How can a mom take the first step in self-care when she's feeling overwhelmed and burned out?


Amy Baskin: Take baby steps. Look at one small thing you can do for your physical health each day, and add one small pleasure. With physical health, look at the biggest area of need. For example, if you're exhausted, rather than go to bed at midnight, take a bath and go to bed at 9:30. If you never exercise and feel terrible, go for a long walk today. Then add a pleasure: Get that book from the library and try that nice tea you bought and sit down and read for 10 minutes. Or call your best friend. Or do five minutes of deep breathing and visualization.


Have you read More than a Mom? We're looking for a mom to do a short review for the June issue of BLOOM. You can follow Amy Baskin at her blog at Today’s Parent Magazine.

In the trenches


Mothers of teens and adults with autism are as stressed out as combat soldiers, according to a study published in The Journal of Autism and Developmental Disorders and reported yesterday on the New York Times Motherlode blog.

Researchers followed a group of mothers and their children for eight days, interviewing moms at the end of each day and on four days measuring hormone levels associated with stress. They found the level of chronic stress experienced by these mothers was similar to that of combat soldiers. And the greater the child’s behaviour problems, the worse the mother’s stress.

My son doesn’t have autism, but I have to admit to feeling “in the trenches” this morning when I got a phone call from his school. Ben is in a class for kids who are deaf and hard of hearing in a high school for students with mild intellectual disability.

It was the principal, asking if Ben had mentioned anything last night about an incident that happened at school yesterday. He hadn’t.

Apparently the class and a few staff went to the park at the end of the day. Ben reached down and picked up a cigarette butt. I’m not sure if he did put it to his lips, or was going to, but one of the support staff was angry enough to drag him across the playground and push him into his wheelchair.

Two other staff reported that person to the principal and she was sent home when she arrived at work this morning. Then the police were called and a report was filed.

I was asked by the police to look for bruises or scratches on Ben tonight (I hadn’t noticed any last night, but I wasn’t really looking).

I couldn’t imagine which of the staff had been involved because they all seemed excellent when I met them at a recent parent night.

When the police told me, I could only picture a warm, energetic, motivated woman I thought was absolutely delightful.

I felt horrible for Ben and how he must have felt. I felt badly that he hadn’t tried to tell us what had happened, or perhaps he felt he couldn’t. I wondered if perhaps the situation was overblown. And I couldn’t help feeling sad and sorry for the staff person involved, who I imagined was sitting at home feeling as terrible as I was.

And then I couldn’t help feeling like I wished this wasn’t happening to us, wasn’t something we had to deal with. I couldn't help feeling shame. I knew my son was a challenge, but was he that impossible?

My hands shook and my chest ached. There I was, in the trenches.