Category: special needs parenting

What matters to me

When our son was about six years old, my husband and I were faced with a difficult healthcare decision. His rare genetic syndrome made it nearly impossible for our son to keep his attention on anything for longer than seconds at a time, and he moved from activity to activity without landing or learning. (I captured a snapshot of a that time in a blog post here.)

His neurologist recommended that he try medication for ADHD. His teacher was supportive, since she watched his struggle to maintain focus in school. But others weren’t so sure. His cardiologist was concerned about side effects that could affect his vulnerable heart. His gastro-enterologist, endocrinologist and his dietician pointed out that he was already struggling fiercely to grow with the help of a feeding tube and growth hormone shots. Did we really want to jeopardize his growth with a medication that would most likely decrease his appetite?

I remember asking friends, family and other parents of children with complex health care needs what they thought we should do. Everyone had an opinion based on what they would do if they were us. The problem was, they weren’t us; it wasn’t possible for them to put themselves in our shoes. Clinically, there was no one perfect choice, and the professionals couldn’t say for sure, either.

Ultimately the decision came down to us. We thought long and hard and boiled the issue down. What mattered more: physical growth or mental/social growth? What mattered more to him? To us as his parents? To our family? With this in mind, we made a choice. Who knows if it was the right one, though in hindsight it still feels right.

I’m grateful that we were allowed to become informed and to make a choice. But that wasn’t always the case. For many years, patients and families were not given choices, and simply told what to do according to clinical guidelines.

Little did I know that almost exactly the same time, across town at Massachusetts General Hospital (the very hospital in which my son was born!), researchers Susan Edgman-Levitan and Michael Barry were writing about an important shift in health care called shared decision making.

In their article Shared Decision Making — The Pinnacle of Patient-Centered Care, they described a process “by which the optimal decision may be reached for a patient at a fateful health crossroads … and involves, at minimum, a clinician and the patient, although other members of the health care team or friends and family members may be invited to participate. In shared decision making, both parties share information: the clinician offers options and describes their risks and benefits, and the patient expresses his or her preferences and values. Each participant is thus armed with a better understanding of the relevant factors and shares responsibility in the decision about how to proceed.”

Edgman-Levitan and Barry go on to say that to work this way, both patients and clinicians need to change:

“Patients should be educated about the essential role they play in decision making and be given effective tools to help them understand their options and the consequences of their decisions. They should also receive the emotional support they need to express their values and preferences and be able to ask questions without censure from their clinicians. Clinicians, in turn, need to relinquish their role as the single, paternalistic authority and train to become more effective coaches or partners — learning, in other words, how to ask, “What matters to you?” as well as “What is the matter?”

Asking “What matters to you?” as well as “What is the matter?” It doesn’t sound like a big change, but it is. The question of “What matters to you?” has become a rallying cry within healthcare among those who wish for healthcare to become more empowering and inclusive for patients, their families and their communities.

In fact, this week marks the fourth annual ‘What matters to you?’ day, celebrated at healthcare organizations around the world to encourage healthcare ask patients, the public and professionals what matters to them.

Here in Sweden, I’m organizing a digital conference. (Info in Swedish here.) I’m excited to show how the question is being asked and used to improve health and care. In the hustle and bustle of the program, there probably won’t be time to think about what it felt like all those years ago when we were stepping into empowerment and involvement, but it’s there in my heart.

So, what matters to me? Connection, respect, learning. A good cup of coffee and saying thank you. Remembering to take the time to smell the roses (and if I’m honest, sometimes picking one as I did this morning on the way to the office). And of course, being allowed to make choices for me and my family. How about you? What matters to you?

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If the lights go out, just move

Winter field andscape in Sheffield

This past winter I spent a long weekend on retreat in stillness and good company. The theme of the retreat was hidden seeds, the way nature can look as if it’s sleeping or even dead, when in fact it is gathering strength, getting ready to burst forth when the conditions are favorable.

I myself was coming back to life after several months of feeling in the dark, disconnected from myself and the people I cared about. Like the winter landscape outside me, I felt used up and in need of rest. Worse still, I felt disengaged and cynical. I hoped the retreat would help me move through this inner winter.

The retreat took place in England, in a wonderful house filled with quirky landings and hallways, double taps at the sink, with a huge vat of tea standing at the ready. Perhaps less notably English but more eco-friendly were the light fixtures in the bathroom stalls. A friendly note near the door latch explained that the lights were motion activated and what to do if one found oneself sitting in the dark:

If the lights go out, just move.

Poetry filled a special purpose throughout the weekend, allowing us to get to the heart of the ideas we needed to talk about in the way only poetry can. This poem by John O’Donahue closed the retreat.

For a New Beginning

In out of the way places of the heart
Where your thoughts never think to wander
This beginning has been quietly forming
Waiting until you were ready to emerge.

For a long time it has watched your desire
Feeling the emptiness grow inside you
Noticing how you willed yourself on
Still unable to leave what you had outgrown.

It watched you play with the seduction of safety
And the grey promises that sameness whispered
Heard the waves of turmoil rise and relent
Wondered would you always live like this.

Then the delight, when your courage kindled,
And out you stepped onto new ground,
Your eyes young again with energy and dream
A path of plenitude opening before you.

Though your destination is not clear
You can trust the promise of this opening;
Unfurl yourself into the grace of beginning
That is one with your life’s desire.

Awaken your spirit to adventure
Hold nothing back, learn to find ease in risk
Soon you will be home in a new rhythm
For your soul senses the world that awaits you.

John O’Donahue, from To Bless the Space Between Us. 2008, Penguin Random House

Receiving those words that Sunday morning, I realize I have firmly stepped up to the threshold; no, I’ve crossed it. A seed has been lying dormant inside of me for many years, gathering vitality, waiting for conditions within it and around it to be right. The safety and ego that once offered a feeling of competence and accomplishment suddenly felt constricting, bursting at the seams like a jacket that is still considered beautiful but is now too small.

Then, with no effort besides the willingness to be a channel for something bigger than myself, I find myself standing here in delight, ready to head out again with just a few essentials. With spare abundance in both things and company, I trust that whatever I need is here. That there is enough. I trust that whatever I have inside me might just be what someone else needs. That I am enough.

The adventure begins. I notice I already have a map in my hands. I look at it and see that there are several paths; I don’t need to worry yet about which one to take–the exact way will present itself in due time. All I need to do is take a step, and trust. Welcoming what comes next, welcoming myself to come along.

If the lights go out, just move.

To start a movement, tell a story

I was recently asked to talk about why I became an advocate for change in healthcare. I could have shared statistics about how patient engagement leads to better outcomes and safer care, but instead I told a story about an evening I had in a hotel bar that changed my life.

My son was about nine years old, and I was attending a training program for parents of children with complex healthcare needs. I was exhausted and overwhelmed, having spent years doing whatever the doctors told me to do—refilling prescriptions, booking appointments, and organizing health records into huge binders that I carried with me to every healthcare visit. On the outside I looked like I had it together, but on the inside, I felt anxious and afraid. Would he ever learn to walk? To read? Would he grow old enough to fall in love? There was so much that wasn’t clear. The fear left me disconnected from myself and from him.

The training involved an overnight in a hotel and I was so happy to get away. In the evening I sat in the hotel bar with another mom, and I made a comment about how hard our lives were. “Cristin,” she said, “if you want me to listen to you talk about how hard this is I will, but if you want to talk about how to make things better, I’m really much better at that.” I was flooded with embarrassment. Over the next few days, the shame turned to hope. How might things be different if I stopped focusing on how hard and scary things were, and instead focused on what I could do to make things better?I

I told how within a year, my life had completely changed. I was able to find a diagnosis for my son—something his geneticists hadn’t in 9 years. I had advocated for a better school and for activities where he could make friends. I connected with some strong, fun-loving parents who faced challenges but didn’t let it define them. We got organized with other families and went to visit our politicians in Washington to make health care affordable, so that families like ours could be safe and healthy. It felt so good to get in the driver’s seat – and it’s something I want to help others to feel.

In healthcare, we talk a lot about evidence. We believe that by telling people the facts, they will change how they think–and more importantly, what they do. We talk to their heads, using reason and logic. Facts matter when it comes to healthcare. Scientific inquiry has helped us live longer, healthier lives. But why doesn’t knowing the facts always lead people to change?

“It’s not a movement unless someone moves,” it is said. We can’t think our way to action. Knowing is important, but at some point, we must also do. Finding the strength and courage to take action almost always requires more than statistics and facts.

Activists, advocates and change agents are increasingly using their own personal stories to awaken leadership in others. Stories speak the language of emotion, the language of the heart. They not only teach us how to act, but also inspire us with the courage to act. Our stories help us translate our values into action by accessing our emotions.

How we tell our story matters. I’ve been to conferences and meetings where a patient or family member was there to tell their story, but rather than moving people to change, the story left listeners feeling accused, resentful or frustrated. I’ve done it myself. Telling my story was hit-or-miss, and I couldn’t quite put my finger on why it sometimes worked and sometimes didn’t. And it wasn’t just from a stage; I would use personal stories in meetings and sometimes got a great response, sometimes lost the listeners entirely.

A couple of years ago I learned about a specific way to use my story to create change. In community organizing, public narrative is a practice in which we exercise leadership by linking our own story to the stories of others and to the story of what is needed in this moment. Public narrative involves motivating others to join you in action on behalf of a shared purpose. These stories have detail and structure. They paint a picture of a problem, a choice and an outcome. Listeners see a way forward and are are moved. Told well, moving stories start movements.

So when I told my story recently, I knew that data and evidence was important. But it wouldn’t be enough to move the listener to action.

How do you use your story to create change? Does it feel too personal or inappropriate? What moments show rather than tell what you care about? Learning to craft your story is a leadership skill. Listen to the stories that are being told and see how they affect you.

Do you want to learn how to use your story to create change? I’ll be teaching a class in Stockholm on June 12, 2019. The aim of the program is to help change agents, improvers, advocates and activists learn the skill of using their story of self to connect with others to awaken leadership and engagement. Find out more about the one-day program Public Narrative–Using story to recruit leaders and build relationships. Contact me for a discount code for my blog readers and other friends. If you’re in Sweden, I hope you’ll join me and my colleagues.

The tyranny of Norman doors

As a person who considers herself often on the threshold — though of what I’m not always sure — doors and doorways catch my attention. They create a boundary between here and there, allowing us to be in one place while looking into another

One particular style of door fascinates me. It’s best summed up in this photo of a door at my office with its many pieces of flair. It has a button with a key on it to show us where to unlock it, and a sign and arrow telling us to do so. There is another lever that releases the lock but should only be used in an emergency, hence the running guy icon. There is also a button to open the door and hold it open, for example if one is wheeling through a cart or wheelchair; this button needs to be held open for a longer-than-obvious period of time, so it too has a note on it telling us how long to hold it. And because we frequently trigger the alarm by standing with the door open too long, there are not one but two signs in English and in Swedish telling us to get a move on. It’s a wonder we ever get out.

Yesterday I learned that this type of door has a name — the Norman door.

A Norman door is a poorly designed door that confuses or even tells you to do exactly the opposite of what you’re supposed to do. It was named after Don Norman, the researcher, professor and author of The Design of Everyday Things, the bible for the field of human-centered design. This video, It’s not you. Bad doors are everywhere. tells the story of Norman doors and the principles behind good design.

It turns out that through their design, objects subtly communicate instructions to people on how they should be used. Certain handles just feel like they should be pushed, and others pulled. Bad design sends us signals that are confusing.

And when things go wrong, it’s usually the user who is blamed, not the designer. Sometimes we even shame the user, as in this Far Side classic. I remember a coffee shop in my old neighborhood that had this panel taped to the door because so many people opened the door incorrectly. But it wasn’t the door’s fault, it was ours.

In the film, Don Norman reflects that “if you continually get it wrong and if other people get it wrong, that’s a sign that it’s a really bad door.”

Swedish designer Sara Tunheden shared the video this week and challenged those of us working in health care to think about the services we deliver and design. Are they really as great as they think we are, or are they Norman doors?

As a person who works within the health care system to improve it, I know I want patients and families to experience health care as a place of partnership, agency, responsibility, power and health. As a patient and family member, sometimes I can get there. Though often the door is surrounded by confusing and unintuitive mechanisms that keep me scratching my head, struggling needlessly, or even worse, locked out.

Good design, according to Norman, offers discoverability (the ability to discover what operations one can do) and feedback (a signal of what happened). For those of us in a position to be offering a health care service, we can ask ourselves some questions:

Are the doors people need to pass through to reach us easy to open, or are they overloaded with gatekeepers and signs in the forms of wait lists, complicated referral or intake processes and inefficient booking systems?

Does the entrance feel truly welcoming for everyone, regardless of race, gender, sexuality, language, intellectual ability and culture? Are people treated with dignity and respect, or as if they should be grateful to have been let in at all? Does the door actually open when the person does all the things they are asked to do? And if it doesn’t, do we blame — or even shame — them for not getting in?

In my experience, we spend a lot of time thinking about what we want patients and families to do, how we want them to behave and act. This isn’t just about access, but even about following our instructions, being engaged, and taking responsibility. When they don’t do that, maybe it’s worth considering that it there may be a Norman door in their way.

Please subscribe, share or comment. I’d love to hear what you think.

Beginnings

tree blossomAfter four years of wonderful work within a large healthcare agency, I’ve been feeling called to step out from the safety of a big organization and explore having more power over my voice, my time and my energy. Ever since I became so incredibly lucky enough to get my heart broken wide open over 10 years ago, what I have loved most to do is to work with others to  make things better, so I hope to keep doing that.

I’m not exactly clear where this new path is going and I’m giving it time to unfold. It’s a bit awkward when someone asks what I’ll be doing next and I have to struggle to find an answer; I’m ok with that. But the practicalities of the everyday world force me to put words around ideas.

For example, moments ago I hit the send button and submitted the registration of a new business, a necessary step to be able to do some work I’m being asked to do. As I completed the field on the form asking for a business description using the language of industry and commerce, it started to feel like I was ruining a great detective novel by skipping straight to the end. So I split the difference and let it be playful. I do hope that should anyone ever read the form, they will accept this description of the venture:

“The business will conduct consulting and training for leaders who work with development and innovation, with a focus on developing health and social services with patients, service users, their families and their advocates. Consulting services include project and process management, coaching and guidance, and planning and moderating conferences. Trainings will increase participants energy and ability to create positive change for society.”

To myself though, I describe it like this.

I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing,
a torch, a promise.

–Dawna Markova

It may not be good enough for a form, but it’s good enough for me. If either description sounds appealing, let me know and maybe we can find something fun and useful to do together.

Oh, s*#t

The speech therapist sent over some new communication cards a couple of weeks ago. They are laminated sheets that contain about a dozen icons that our family can use to have better, more focused conversations with my son. Without them, there’s often whining, interruptions and repetition. With these cards, we still do all those things, but we also do a little bit more chatting about the day and our plans for the weekend, specifically whether or not we will eat tacos on Friday night. (Spoiler alert: We will.)

fredagsmys
Communication card for the weekly Swedish phenomenon Cozy Fridays, aka Fredagsmys

This particular pack of cards is aimed at older kids, now that my son is well into his teen years.skit också You can probably imagine my surprise when I see that on the cards is a pictogram for a swear word. “Oh, shit” shows a generic-ish person with a palm to the forehead. Useful for many contexts, but not the kind of language I promote with my kids.

I easily forget that my son is getting older, mostly because he’s physically small but also because he needs help with things that kids his age have figured out how to do long ago. But that doesn’t mean he’s a child in every way. Because he needs my help, it’s also easy to believe that I should be allowed to make choices about things that parents normally wouldn’t–his clothes, his music, his activities, and even his language. People with disabilities have been pointing out how society infantalizes them for decades. I do not want to be that parent, so we laugh and practice saying it together.

There are so many areas where I’m going to be pushed out of my comfort zone. Swearing, friends, alcohol, sex. His body is changing, his needs are changing. He’s getting older, and so am I. Oh, shit.

Turn your face to the sun

flowers plant spring macro
Photo by Pixabay on Pexels.com

”Like Spring secretly at work within the heart of Winter,
Below the surface of our lives
Huge changes are in fermentation.
We never suspect a thing.
Then when the grip of some
long-enduring winter mentality
begins to loosen,
we find ourselves
vulnerable
to a flourish
of possibility
and we are suddenly negotiating
the challenges
of a threshold…”

Thresholds, John O Donahue

The snowdrops came up this weekend. Their reappearance every year brings a shock of hope so unexpected and intense it’s almost violent. It only took a few hours of sunlight on a warm brick wall and there they were.

It’s easy to forget, when things are hard, that there are forces waiting just below the surface. Dormant, gathering strength, looking for their moment. Not just in nature. Remember the snowdrops, Idealists, and turn your face to the sun.

 

 

The tired tropes of special needs parenting

If you listen to or read pop culture reviews, you’ve probably stumbled upon a conversation about tropes, which are basically plot devices, themes or recurring character types. It’s impossible to tell a trope-free story; even our most basic story-telling devices are tropes, like having a beginning, middle and end, or the classic struggle between good and evil. Without them, stories are just random strings of images.storytropesbingo

When overused, tropes become clichés (Will they or won’t they?) or even offensive (“What do we do now?”). And sometimes, there are just so many of them going on at once that the result is referred to as a trope salad. Exploring tropes is fun, and entire websites and wikis are devoted to cataloging them.

When disability gets represented in life and culture, plenty of tired tropes surface. My Twitter feed was lit up last month with a debate around professional conferences that feature inspiring, overachieving people with disabilities, aka supercrips, a pop culture staple. Lately I’ve been irked by a reality TV home makeover show for a “needy families” willing to share their desperation and tears on cue so that they can be rescued by “angels” (no joke) and we viewers can feel blessed and generous. Representing disability in pop culture can be a bit of a landmine and I appreciate it when writers call out disability clichés.

As a special needs parent, my antennae are always up for tropes about parents like me. One of my first blog posts was about my love/hate relationship with Mamma Bear. I’m sure that I could find plenty of examples for clichés that I’ll just call Disengaged Dad, Super Mom, the Invisible Sibling, the Parents In Denial, and the Pity Family.

If we suddenly become special needs parents and we don’t have any other role models, there’s a risk that we actually adopt these personas. I personally auditioned for several of those roles. Sometimes I even got the part for a season or more. Award worthy performances.

Luckily, I also met plenty of parents who showed me that I didn’t need to play a cliché, because life was too complex and interesting. Parents who were strong and vulnerable. Who had their crap together most of the time, but didn’t apologize when they lost it once in a while. Who were incredibly creative problem solvers, except for that one area that was a total blind spot. These folks defy stereotyping and two-dimensionality. Just like all parents. Just like all people. Just like everyone, we contain multitudes.

Have you cast yourself in a role that was just too flat for real life? Are you doing it now? Do you know someone who is defying typecasting? How might you allow yourself to be a little bit more complex?

 

 

Passages

I opened a book last week and a bookmark slipped out onto the floor. It was a freebie from a favorite bookstore from my old life, back when I lived on the other side of the ocean. I loved that bookstore, with its coffee counter and author events and the way it always had exactly the book I needed even when it didn’t have the book I wanted.

The bookmark skidded across the floor, a little wave hello from another time, another me, a reminder that of the actual physical things that I packed and carried with me from that life, fewer and fewer remain. Clothes have become too small, plates have broken, toys have become boring. The things have stopped fulfilling their purpose and have given way to new things. There’s nothing to do but let them go. A spot somewhere between my heart and my throat clenched in missing and longing.

Recently I realized I’ve spent nearly every weekend for the past five years frustrated that I can’t seem to get myself and the kids out of the house like we did when we lived in Boston. Back then, being home on the weekends was a real struggle; our son’s disabilities made it hard for him to sit with anything for more than a couple of minutes, cycling through toys and activities at a pace that I couldn’t keep up with. My own inability to sit with that fact had me crawling the walls. Weekends became about getting up and getting out. Picnics, walks, bike rides, car rides to ice cream stands miles away, zoos…we were great at getting out.

These days, we don’t get out like we did then. Our house and life work differently and being at home works more often. But somewhere along the way I forgot that we went out because we had to, and when we didn’t anymore I started blaming myself that I wasn’t doing a good job parenting.

Like stuff, activities, habits, rituals and routines stop being useful. I forget that sometimes and cling to doing things the way I used to do them or having the things I used to have. It’s gotten me thinking about how what other worn out expectations and habits I’m holding onto, how much energy I’m pouring in to maintaining our old way of life and blaming myself when I don’t. Some things are worth the effort, but some things are no longer fit for purpose. I’m going to think about that for a while, and am curious to hear what you cling to or have let go of, too.

 

 

Hello, hello

It’s been so long since I shared any writing here that I need to say hi before diving into my own stuff. Hello. How are you? What’ve you been up to? Are you taking care of yourself?

Speaking of hello

Last week I took my son to a pre-surgery appointment at the hospital. We hadn’t even reached the main lobby and I was feeling anxious and stressed about the upcoming surgery, and frustrated that I had to take him out of school for a visit that we probably could do over the phone. A cloud of general dread was also hanging around mostly because of lingering emotions hanging around from the six weeks we had spent there last year, triggered by the smell of the parking garage and the sound of the music in the elevator hall. Let’s just say I was not my best self.

And then something happened. Sitting on stool off to the side behind the front desk, a janitor was chatting with the receptionist. As we approached, he looked at my son and greeted him by name. “Hey buddy, how are you doing?” I hesitated for a second and the man looked at me and said, “I remember him from when he was here before.” It was really remarkable.

While it’s really impressive that he remembered us, I thought even more about the fact that he said hello at all, and how that made me feel. Saying hello can seem like a token transaction, but really it’s a way to let others know that we see them. My shoulders loosened. I was reminded of the importance of kindness.

Hälsa means both health and say hello

There is a beautiful word in Swedish — hälsa. As a verb, it means to say hello or to greet. As a noun, it means health. The words are connected etymologically from the word hel, which means whole and even perhaps from helig or holy, sacred. To say hello is to wish someone wholeness and wellness. How wonderful to be reminded that all these words are connected! A simple hi can say much more than we think.

Bringing back hello to healthcare — The 10/5 Rule

I remember reading about hospitals in the US launching campaigns to bring back saying hello in health care environments. Inspired by the service industry, they began adopting the 10/5 Rule, or the Hospitality Principle, to help instruct their staff on how to provide courteous service through greeting. The 10/5 basically recommends that when within 10 feet (3 meters) of a guest or patient, staff should smile and make eye contact; when within 5 feet (1.5 meters), staff should say hello. This also means that staff should stop their conversation with each other in preparation to greet.

What does this mean for health care?

The 10/5 Rule, with its roots in companies like Walmart and Disney, can seem like an American attempt to commodify courtesy or institute robotic friendliness. At the same time, I know that my experience as a caregiver and patient matters. When I’m treated well, I also treat others well, which must be better for staff in the long run.

So much of what we’re doing in hospitals these days when it comes to improvement is really expensive. New buildings, new IT systems, more staff. As a parent and patient, I know what feeling invisible, afraid and alone feel like, and sometimes I think healthcare is missing out when it focuses on the big ticket items and skips over delivering common kindness.

Personally this has gotten me very curious about how I say hello, and what it means to those around me. I’m going to be experimenting with how I can sincerely show the people around me that I see them and care about them. I’ll keep you posted. Until then, bye!

Other resources for “Say hello” campaigns

Implementing the 10/5 Rule in Nursing homes

A video from Children’s Hospital of Pittsburgh

Here’s a very enthusiastic training video from ASMMC Medical Center

Reflections from Tufts University professor on the power of saying hello from Psychology Today

Amy Rees Anderson shares background on the evidence of saying hello from Forbes magazine.