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Tara Cousineau, PhD

Clinical Psychologist, Kindness Warrior

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resilience

Rx when Parenting a Child with a Chronic Condition

August 16, 2019 by Tara Cousineau Leave a Comment

Heavy Doses of Compassion

A dear friend from ages past texted me that his son, who just graduated from high school, has cancer. My heart broke open in a millisecond. I was standing in a Sunday morning line for coffee. The news about his son stopped me cold. Life is so unfair. I couldn’t stop shaking my head in disbelief. The poor barista thought I was complaining about the service.

I met Tom when we were 17 on a school program to the United Nations. I like to joke that he was on the bus of smart Canadians and I somehow sneaked into the program. To apply to the program I wrote an essay about the former UN Secretary Dag Hammarskjöld, with a quote I found in a library book. I’m fairly certain that I was the only one in my town who applied. Now I find it interesting that the chosen quote conjures up the timeless suffering of mothers (of which I still have written out in my neat teenage handwriting). For a whole week we visited New York City, the UN, and went to the top of the World Trade Center for a view of Lady Liberty. The towers no longer exist, of course, and yet they will always be tied in some small measure to that adolescent flirtation, the ideals of humanitarian efforts, and the fragility of life.


It is said that the tears of one mother are the tears of all and the glory of one man is the glory of all men…

Dag Hammarskjöld, 1953

We now are parents and professionals living full lives in different countries marked by the trials and triumphs of being mere humans—we share the main headlines that might fit in a text message or over an occasional phone call. He’s a school principal. I’m a psychologist. He has boys. I have girls. And I wholeheartedly share in his current optimism: his son has a highly curable form of cancer.

I don’t want to offer up a cliché but I will: Perhaps there are few comparable experiences that collect the kind of battle wounds like the scars you get from child rearing. At the same time, there is nothing like the joy and pride that arise in the smallest of moments in watching your children thrive. You never think your heart can crack open wider and then it just does. It’s that very vulnerability that exposes us to the abyss that is human suffering. Deep love. Deep pain. 

A child’s cancer diagnosis is a shot to the heart.

I sat with my cup of my tea thinking about Tom and his son when I saw a family stroll in. They pushed a daughter, now a young adult, in a wheelchair. I wondered about her. A spinal injury? A congenital condition? Hard to say. Her hair was neatly brushed. She wore a shimmering cherry lipstick. It was carefully and lovingly applied. I was overcome with emotion.

I began to count. 

In my mind I lined up a dozen random parents I know in my community. How many had a child with a chronic or serious illness or condition? I summoned up a list of their children’s conditions: anxiety, addiction, ADD, autism spectrum, clinical depression, cerebral palsy, a congenital heart condition, kidney disease, and post concussion syndrome, including two deaths due to chronic childhood illnesses. That our community has been spared a youth suicide or fatal car accident or death by gun violence seems—statistically—a stroke of luck. I included myself in the line up of parents. We have a daughter with potentially lethal food allergies. Sophie is now 21 and has not outgrown them. I’m only mildly relieved that her boyfriend is an EMT.

How many of these parents suffer quietly with the plight of their child’s condition, or keep to themselves for the sake of privacy, or simply are heads down with caregiving that others don’t even know to reach out? I also imagine parents in other communities who don’t have the privilege of a well-resourced school system or medical access or aren’t able to rally funds for research or costs of care. The bottom line is that more needs to be done for families to foster the kind of resilience that may be needed for a long haul. Two colleagues (Lorraine Hobbs and Kimberly Arthur) and I recently published a journal article about the need to support parents with children with chronic conditions: The Role of Compassion and Mindfulness in Building Parental Resilience When Caring for Children With Chronic Conditions: A Conceptual Model. (Please read and share it. E-Book here.)


…both mindfulness and compassion have significant potential to support this process of working through adversity and finding ways to develop inner resources to cultivate acceptance, find meaning in the context of complex parenting challenges, and respond to the child and oneself with kindness in the face of persistent stressors associated with children’s chronic conditions.

Cousineau, Hobbs & Arthur, 2019

A Silent Suffering

We couldn’t write about our personal experiences in this kind of academic platform yet our hearts were totally in it. We have children with various conditions requiring different levels of care and attention. So we try to walk the talk and wrote the article. Here’s why: 

Parenting a child with an illness or disability is very common yet remains a silent plight for many. 

Close to 20% of parents have a child with a chronic condition or disability, which is defined as any condition that has lasted or is expected to last for at least 12 months. Personally, I think this is an underestimate due to under reporting and stigma. But let’s just say that 1 in 5 parents/families has a child with some sort of chronic affliction. (There are 83M families in the US and 15M single mothers.) Assume for the sake of my argument that you are in a room full of parents. The next time you are in a meeting at work or a school PTA meeting, or at a place of worship, or on a commuter train imagine that for every 4 seats the 5th seat has a parent facing a difficult illness challenge with a child—no matter the age of a child. Imagine yourself in his or her shoes. 

One memory that comes to mind is when my daughter Sophie was three years old and at preschool. She took a cracker out of a snack jar. Apparently another child with sticky peanut butter fingers had also done so. Her face blew up like a balloon immediately. The EMTs were called. She chugged some liquid Benadryl. She recovered. The school eventually became “peanut/nut free” to the chagrin of other parents. It was a common battle cry across American schools: “Why should my child give up his PB&J?” “That’s the only thing he eats and he has the right to have peanut butter.”  “Why should my kid starve?” Parents of the afflicted child would counter, “This could be a life or death situation. Surely you can see that?” “You’d rather see a child risk her life than to find something else for your kid to eat?” “Try carrots instead.”

Later the solution in the elementary school was to separate the food allergy kids from the others at lunch time, leaving Sophie at a table all by herself. She became a pariah, a social outcast. The social stigma was an unintended consequence, of course. And it was unacceptable.

BFFs on a Hot Summer Day

Then guess what happened? God bless the children to find solutions that parents or administrators can’t see. Her friends began to sit with her. Over time they became little vigilantes monitoring who had what in their lunch boxes. The girls made sure their parents knew about Sophie’s food allergies for birthday parties and sports events. They educated themselves. They watched the Epi-pen injection video and practiced puncturing an orange with a plastic model pen. Although we were all in a state of anticipatory anxiety, organically we cultivated a “community watch.”  Eventually, we all relaxed. When a local 15-year old girl died from anaphylaxis after a severe allergic reaction just days before her 16th birthday, despite the family’s careful precautions, the threat became all too real once again. (See Project Abbie at Harvard.)

Compassionate Action

My daughter’s situation may not compare to the plight of others. A food allergy is an episodic condition that is largely reliant on prevention and avoidance, yet can have a fatal outcome. Yet that’s not my point. Millions of parents are managing some sort of childhood condition every single day. Of course, the medical conditions and potential outcomes vary among children: Children may be hospitalized for depression or suicidal ideation, or suffer a physical illness or condition; or a child may be contending with developmental delays, mobility issues, aggressive outbursts, or chronic pain. There are IEPs and accommodations, specialists, and regular medical monitoring, and concerns about independent living in adulthood. It can be all consuming at times.

What is common is the persistent fear and distress felt by a mom, dad or caregiver. Whenever a child needs specialized care or attention, there is a slow wear-and-tear in the fabric of parenting. An unraveling may occur in parallel with a kind of constant mending, in attempts to emotionally or pragmatically hold it together. There is also the mental “code switching” between taking care of a child’s current needs and the anticipation or planning for the future “what ifs.”  It’s hard to be present when the mind is in a ricochet of tending tasks. Let’s not forget that many parents inevitably put their personal needs and goals on hold and may also be economically impacted. Even the most optimistic or well-resourced parents will find themselves in moments of despair or panic. That’s the only natural response. 

What I love about compassion-focused approaches to parenting is the recognition that biologically we are wired to protect and ward off threat. That basic understanding can begin to shift how we communicate and respond. I can’t blame the pro-PB&J parents. They want their children to have what they need to survive. They aren’t thinking about the other tribe of parents who also want their children to survive by avoiding PB&J at all costs. Our perspective narrows when we are threatened. The single focus is on survival. The emotions that drive defensive behavior include anger, anxiety, fear, or disgust. As I wrote in my last post, Lead with Love, when we notice which emotion regulation systems are activated (threat, thrive, care/connect), we can begin to respond to life’s experiences in more beneficial and grounded ways. We can respond in a more balanced way.  This is where mindfulness and compassion comes in. 

https://www.frontiersin.org/articles/10.3389/fpsyg.2019.01602/full

The approach we proposed in the article emphasizes relational compassion and self-compassion. All too often the sole or primary focus is on child medical outcomes rather than parental resilience. This is understandable but to use another cliché—the one about the oxygen mask on a flight—we have to help the caregivers put on the oxygen mask first. The point in our article is we believe that cultivation of safety, connection, and caring is essential in any communication, intervention, or resource created to support parents when caring for a child with a chronic condition. This helps to get parents out of the constant threat/survival mode and offer relief from the exhaustion that can come from empathy fatigue, persistent uncertainty, constant caregiving, or social isolation. This means growing both inner strengths and outer strengths.

We consider the mindfulness and compassion skills as a way to “bounce forward” rather than “bounce back”—because life will never revert to a previous way of parenting. Resilience is inherently about caring, connection and community. It also requires a kind of deep knowing that we all belong to one another. In this way we are responsible for the welfare of the collective “we.”  Parenting is hard under optimal circumstances. No family is immune from threat, loss, or disappointment. It can take some emotional courage to turn toward what is difficult and reach out to a family in helpful ways—especially when vulnerable children face challenges. The default is to respect privacy, or not impose, or keep a safe distance, or drop off casseroles. I get it. But we also have to stretch ourselves and connect with parents. We don’t know what we don’t know.

Take the risk: Ask them.

How may I be of help? Is there something specific I can do? What is important for us to know? Is it Ok if I check in every once in a while? We are here for you.


Interested in more? Watch this beautiful Ted Talk. Heather Lanier tells her story of having a daughter with Wolf-Hirschhorn syndrome, a genetic condition that results in developmental delays.


My colleague and friend Susan Pollak, EdD, just published a beautiful book called Self Compassion for Parents: Nurture Your Child By Caring for Yourself (The Guilford Press, 2019).  What’s on the cover? Two slices of PB&J!  That got me hooked. She wrote it for every parent, of course, who deals with the ordinary and extraordinary challenges of parenting. I particularly love the “Fierce Compassion” meditation and “Soothing Touch in the Heat of the Moment.”  I highly recommend it.  


Photo by Thais Morais on Unsplash


Filed Under: Books, Compassion, Courage, Empathy, Meditation, Mothers & Daughters, Parenting Tagged With: childhood illness, compassion, disability, empathy, family, parenting, resilience, Self-Compassion

Lead with Love

August 1, 2019 by Tara Cousineau Leave a Comment

There’s a funny thing that happens when you start walking the kindness talk.  People seem to crave it. Recently, I’ve been asked to speak at various companies and organizations — from accounting companies to human services, from high net worth investment firms to public schools.  What’s the common denominator? I’d like to think this trend is about how we each can be more of the human we want to be: caring, wholehearted and generous. That’s part of it, of course. That’s the bright side of such a talk. But underneath is a deep need to understand what gets in the way. That’s the shadow side. 

We need to become friends with the shadow side. 

This is easier than you might think. The dark side of corporate culture reveals itself in the face of fear and threat — meeting deadlines, KPIs, profits, career advancement, and all the usual suspects that arise when real or imagined survival is at stake — at the expense of human connection and compassion. 

The paradox at the heart of this matter is that it’s okay to be competitive AND cooperative at the same time.  It’s more than okay. It’s necessary. It requires awareness in how humans respond to the world, through three emotion motivational systems espoused by the British compassion researcher and psychologist Paul Gilbert. I wrote about it in The Kindness Cure in chapter 10 (Emotional Paradox).

The paradoxes you can experience in your own mind are clashes between the “old brain/mind” and the “new brain/mind.” Your “old brain/mind” is the “base model” of human emotional regulation and hasn’t changed much over millennia. Its job is to serve your basic survival instincts as soon as possible and to seek out pleasure and comfort. It is speedy and reactive. The three main emotion regulation systems operating within it are:

• A threat and self-protection system (red) that senses threats quickly and activates the fight- flight-freeze- faint response in your limbic system. This is like your home surveillance system.

• An incentive and resource-seeking system (blue) that propels you to seek pleasure, consume, play, strive/achieve, and mate. It’s like an Energizer Bunny scurrying about, looking for fun or success in life.

•  A soothing and contentment system (green) that seeks balance, rest, and connection, and is strongly linked to affection, bonding, caregiving, kindness, and compassion. This is the calm and connect system, and it is a bit slower to come online, but when it does, it gives you a sense of overall wellbeing—like a baby’s snuggly or a rocking chair.

Your “new brain/mind” developed later in human evolution. It’s really smart. The newer model is more complex and allows you to work things through, compare, contemplate, mull things over, create, innovate, imagine, seek knowledge, strive for goals, and develop an identity. This allows for quick learning, exchanging information from among groups, and passing on these adaptive genes to future generations. Importantly, this sophisticated upgrade allows you to be aware that you exist and have a sense of self. Thanks to your “new brain/mind,” you can be aware of your awareness, unlike any other animal, and observe your own mind. This is, of course, both a blessing and a curse.

When your “new brain/mind” is pulled by the fears and passions of the “old brain/mind,” you can get stuck in unkind behaviors (toward yourself or others). This is the unfortunate bug in the system, so to speak.

Workplace Woes, Compassionate Action

This came up in a recent conversation. I was a guest on a podcast summit created by Mari-Lyn Harris, founder of Heart@Work, who I met via Linked In through what I call kindness spotters.  (We kindness warriors just find each other.)

Mari-Lyn has been figuring out ways to share the news about leading with kindness, to assist leaders in cultivating better productivity, profits and a happier workplace culture. She created a Virtual Kindness Conference and you can watch it (it’s free). The interviews include short and sweet conversations with experts about workplace culture. You can watch the interviews at Heart@Work or on YouTube.  I talk about befriending the inner critic at work and gathering positivity allies to counteract the negativity that even one nasty person can evoke. It takes commitment.  Of course, it helps when leadership/management adopts and embodies the values of caring and compassion as integral to company goals, even if you are selling widgets or crunching numbers. You might enjoy the series and have something you would like to offer to an ongoing conversation on kind leadership.

Here’s to growing a kind mind.


21 Days of Kindfulness: Get daily notes to your inbox for just three weeks — which is about the time it takes for a new habit to take root. I invite you to kickstart kindness in your life and share with a friend. It’s free. 

A Little Deck of Kindfulness: The card deck is here! (See the sample image above). Cultivate more kindness and compassion for oneself and for others. Order now! (in continental USA).


Filed Under: Balance, Compassion, Courage, Inspirations Tagged With: brain, compassion, competition, culture, emotion regulation, leadership, love, productivity, resilience, wellness, workplace

One Big Boston Group Hug

April 24, 2014 by Tara Cousineau Leave a Comment

Baby Chic with Egg Shell 123RF Stock Photo

Patriots Day.

Easter Monday.

She was born on a Good Friday.

My daughter turned 14 on Marathon Monday in Boston. Every year her birthday also falls on a school vacation week. As she’s gotten older, this reality has gone from the anticipation of egg hunts to disappointment when all her friends are away. Not to mention that last year we were in a surreal citywide lock down after the bombings.

So, this year was special indeed. We spent it at the Boston Marathon.

Redemption. Forgiveness. Compassion. It was all there. We could have opted out. High security. Large crowds. Nervous peeps. But we chose to participate. And am I ever so happy we did.

IMG_5106

We had five young teen girls in tow. We scored a spot in Kenmore Square, between mile 25 and 26. My older daughter was at Hereford Street with her friends – just at the turn of the finish line – with a mom who cried every time a wheelchair team passed by.

I think there are relatively few experiences in life that makes an impression like a community coming together with compassionate purpose. Over 32K runners and a million strong along the sidelines from Hopkinton to Boston, all cheering like mad. You could feel the energy and good will. For me, it restored faith in the greater good of humanity.

I thought about the work in compassionate conversations. Dr. Andrew Newberg and Mark Robert Waldman, whose work I can’t put down, describes the way we communicate with one another can fundamentally change the brain. I thought, “Whoa, what kind of ‘neural resonance’ might be happening along the Boston Marathon route?”

They write that, “kindness builds cooperation and cooperation builds a better brain.” Let’s hope we sprouted a few more compassionate circuits by witnessing this race!

Even more so, the outpouring of support represented for me meaning making at the societal level. When people stand up for what they believe in, life has purpose. Nobody knows what the personal values of the people on either side of us might be, but it brought them to the marathon.

Newberg and Waldman write: “Even though everyone has a unique set of values – running the spectrum from highly idealistic principles like truth, integrity and growth, to highly interpersonal values like love, family and friendship – when people openly share their values with each other, they come together and express mutual support.”

With Boston Strong slogans everywhere, there was certainly a sense of camaraderie. But more than that there was a resilient sense of respect, awe and love – it was ten people deep on both sides of a 26.2 mile stretch.

I believe the 2014 Boston Marathon will leave an impression of a lifetime on my daughters. We saw the elite runners, the dad of one girl in our tween entourage and scores of people from all walks of life and all abilities. A blind man. A pregnant woman. Survivors from last year’s bombing in wheelchairs. The National Guard in combat boots. Team Hoyt. The runners for the foundation created in memory of little Martin Richard, MR8. Runners from Germany, Mexico, Chicago, and San Diego, Canada. Thousands upon thousands of runners and many more spectators. Truly Impressive.

And then the next day, my newly minted 14-year-old ran 3 miles across town.

 

* * *

Filed Under: Compassion, Courage, Inspirations Tagged With: Boston marathon; compassion; cooperation, courage, love, resilience

Planting Seeds of Self-Compassion in Childhood

March 26, 2014 by Tara Cousineau Leave a Comment

Chick with Head Under Wing  - 123rf.com

It’s difficult as a mom the bear witness to a child’s grief.  Recently, my little one – little at least to me – was diagnosed with deteriorating bone condition in her elbows. It means she can’t do her very favorite sport, gymnastics.  For reasons, still mysterious to me, Josie has been jumping since I found her hanging by one arm off the side of her crib at 10 months old.  One tumbling class after another sprung her into the throws of competitive gymnastics. She has spent at least one-third of her life in a gym. If I calculate the time it is over 10,000 hours. She’s not even 14 yet.

Josie in Flight ©Tara Cousineau 2014But the wear and tear proved too much on her arms, such that the impact of tumbling stopped the flow of blood and nutrients to her elbows and the bones started dying. A bird with broken wings. Surgery is in her future. In spite of the pain, she just competed in her last state championship meet in a very limited way (for the team!) and eked out one last medal. It took a lot of courage.

We had a long drive home in the dark and in silence. There were muffled tears. If I tried to speak, she’d “shush” me. Shhhhh!

Then, after a long while she began telling me about news story she had heard recently – about a man who was creating prosthetic limbs for children in Africa. Indeed, these were for people whose arms had been blown away in war or maliciously butchered off so they could not stand up against the warlords. “The man was making this one kid a set of new arms with fingers,” she reported. “So the boy could pick things up and eat with a fork.” Then she remained silent.

Baby Chic with Egg Shell 123RF Stock PhotoI didn’t know quite what to say. I was just trying to hold back my own grief about the inevitable goodbye she have to make to her coaches and her gym family in the upcoming week.  And here she was, in two sentences, giving perspective to her life in the bigger scheme of humanity. She was suffering yet she could appreciate, and identify with, the plight of others far worse off than she.

Really, there was nothing more to be said.

Kristen Neff, PhD, a leading expert on self-compassion describes three attributes: mindfulness, self-kindness, and common humanity.  Essentially, self-compassion involves the ability for a person to hold in awareness one’s own suffering – without judgment; it means being able to direct kindness, warmth, and understanding toward oneself; and finally, it entails the ability to experience one’s pain as part of a universal human experience. We are not alone.

There are teachable moments every day, even in long drive home.

 

Bird's Nest with Robins Eggs

 

 

 

Filed Under: Compassion, Courage, Mothers & Daughters Tagged With: children, common humanity, grief, mindfulness, perspective, resilience, Self-Compassion

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