Repetitive strain

I've been diagnosed with repetitive strain in my hands and wrists, so I'm hoping to get speech-recognition software!

When I thought about the diagnosis -- repetitive strain -- I couldn't help thinking that the words 'felt' a lot like the experience of raising a child with disabilities. And the strain doesn't come just from the child's challenges, but from attitudes and physical barriers and cultural expectations about what matters.

I read two moving posts by parents this morning that I want to share.

A meandering rant about how more is less and less is more spoke to me. Jennifer Johannesen writes:

We like our disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! Don’t get me wrong – where we were 50 years ago is unthinkable. But why is it that families with disabled kids, and the kids themselves, are encouraged and rewarded for working harder than everyone else around them? The tasks are one thing – compound them with expectations, grief, lack of sleep, managing schedules, integrating team members, medical emergencies…

I drank the kool-aid for many years before finally, happily, giving it all up. Contrived, monitored, critiqued exercises gave way to joyful, authentic, meaningful experiences. Are you wondering, Is she really saying this? How could she not want these things for her son?!

Trust me, it’s not that I didn’t. I just decided that the cost was too high. For both of us.

And Elizabeth Aquino had this to say on Mother's Day: Tonglen

When I am near to despair over Sophie's seizures I practise tonglen by breathing in the sufferings of all the mothers I know who have children that seize and all the mothers I don't know who have children that seize. And then I breathe out. I breathe out love and compassion and health and happiness for all those mothers and all those children. I believe that embracing suffering, meeting it, accepting it and even embracing it might lead to understanding it, and that understanding connects me, deeply, to others.

Some other interesting links:

Life and the Cosmos, Word by Painstaking Word

A New York Times interview with Stephen Hawking:

"My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with," he says. "Don’t be disabled in spirit, as well as physically.

'Holy Nonsense:' Autistic artist's work intrigues (see image above).

Hope builds for treating intellectual disabilities

Condo blocks mom from installing wheelchair lift for disabled daughter

600,000 adults could have autism that has gone undiagnosed

New Disability History Museum website

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BLOOM one of best non-profit blogs

BLOOM is named one of the nine top non-profit blogs by Mark W. Schaefer, a well known blogger at {grow}, social media educator at Rutgers University and author of The Tao of Twitter.

Mark partnered with  Helen Brown, whose company teaches non-profits how to raise funds, to "examine more than 250 blogs from some of the largest and most important charities anywhere. We looked for the blogs that were engaging an audience, offering superb content, and aligning with the organization’s strategies."

This is what Mark says about BLOOM:  This blog brought tears to my eyes. If you’re a parent, it will probably have the same affect on you. Bloom is about parenting special needs kids. It isn’t fancy. In fact it’s just on Blogger. But what it lacks in sophistication it more than makes up in courage and heart. Writer Louise Kinross has something unique and personal going on here. She has nurtured an active, loyal community and with good reason … this is blogging at its best.

I am honoured that we are recognized here and thank you -- dear readers and writers -- for enabling us to grow a worldwide community of families and professionals who share the joys and challenges of parenting children with disabilities, talk frankly about difficult subjects and celebrate our children!

I hope this is a place where you feel heard and understood. Louise

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Happy Mother's Day!

Ben took this shot of D'Arcy and I at Cherry Beach! The other kids refused to get out of the car (there was an infestation of bugs). Happy M's Day! Louise

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'I'm not no one, I'm his mom'

I think the most engaging presentation at the patient- and family-centred care conference in St. Louis was by Jim Conway, a lecturer at the Harvard School of Public Health.

Jim has held senior positions at the Institute for Healthcare Improvement, the Dana-Farber Cancer Institute and Children's Hospital Boston.

Jim talked about an experience in the 1970s that woke him up to the essential role of parents in the care of hospitalized children.

He was an administrator in radiology at Children's Hospital Boston and explained to a mom that she couldn't accompany her child into the x-ray room. "I don't care who you are, I'm staying with my kid," she said. When he pointed out the sign that said "no-one" was allowed through the door, the mom said: "I'm not no one. I'm his mom."

During his 27 years at Children's Hospital he learned that if there was a discrepancy between a child's hospital health record and the mother's account, they were to go with what the mother said, because "we were only taking care of a piece of that child and she was taking care of the whole child."

Since that time, hospitals that are committed to partnering with families have stopped viewing parents as 'visitors' and allow 24/7 access.

Jim said family-centred care occurs when patients and families are treated as partners in care at every level: from their participation on key hospital decision-making bodies to their input at the bedside. "Patient- and family-centred care isn't an advisory council," he said. "That's just one piece."

Leaders play a critical role, he said, communicating in words and actions that the patient's safety and wellbeing guides all decision-making. The entire system is organized around the choices and needs of patients and families.

Jim shared research that shows that patient- and family-centred care reduces length of stay; lowers cost per case; reduces adverse events; improves employee retention; reduces operating costs; decreases malpractice claims; and increases market share.

A recent study in the International Journal of Health Care Quality showed that hospitalized patients who participated in their care cut adverse events in half: "Among the 788 patients with both patient survey and medical chart review data, there was an inverse relationship between participation and adverse events."

Some leading patient- and family-centred care practices include having patients and family members on boards, starting board and hospital meetings with family stories, and including patients and families in bedside rounds. "Nothing builds will more than meeting your patients," Jim said.

Patient- and family-advisory councils are now mandatory in Massachusets hospitals and 93 per cent of health leaders surveyed in 2010 said the patient experience was one of five top priorities (35 per cent said it was the top priority).

Jim concluded by saying that patients and families are the only people who know the ins and outs of your hospital and that if healthcare is on the table, patients and families have to be there too.

He shared a quote about the evolution of patient- and family-centred care from advocate Martha Hayward:

Do it to me.
Do it for me.
Do it with me.

The conference was run by the Institute for Patient- and Family-Centred Care. They have excellent materials on their website.

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What disabled children teach us

Read today's New York Times book review of Ian Brown's The Boy in The Moon. Ian is contributing a piece to the June issue of BLOOM.

What disabled children teach us

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BLOOM on NY Times blog!

Part of my recent blog "In each other's eyes, we are enough" was posted on the New York Times Motherlode parenting blog this afternoon.

Please visit and leave a comment to support their coverage of families of kids with disabilities!

A Perfect Baby

Do we all think our babies are perfect? Did nature build us that way? Louise Kinross thinks so. Ms. Kinross’s son Ben was born with a rare chromosomal deletion that makes him look different. In an essay on BLOOM, a Canadian magazine for parents of kids with disabilities, Ms. Kinross, communications manager for the Holland Bloorview Kids Rehabilitation Hospital in Toronto, wrote of a moment like the one I just had, staring at a photograph and being surprised by what was captured there. She writes...

Thanks! Louise

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Day 1 at family-centred care training

The conference in St. Louis started with breakfast at 7 a.m. this morning.

At a table for family advisors I met two parents who have been working for change for a long time: Nancy DiVenere, president of Parent to Parent USA and Juliette Schlucter, the former project consultant for FCC at the Children's Hospital of Philadelphia. Nancy told me her 35-year-old son had a stroke at birth, but was now a special-education teacher who was married. Juliette has three young adult children, two of whom have cystic fibrosis. One of the latter just ran a half-marathon and the other is an 18-year-old singer recording with producers in Beverley Hills, Calif. Check out her website about curing CF and empowering teens: Singing at the Top of My Lungs.

For a second I felt sad that my son didn't have the same kind of success story, but then I remembered this quote: "Comparison is the thief of joy."

The day was packed with workshops and smaller meetings and I will try to distil what I learned in the 30 minutes I have before meeting the group for dinner.

Family-centred care is about working "with" patients and families, rather than just doing "to" or "for" them.

Our practices need to reflect a continual dialogue with patients and families about what matters. We don't do things because it makes sense for the system, we've always done it this way, or it meets the needs of the doctors.

The key concepts of FCC are: respect and dignity; sharing information in a way that is useful to patients and families; participation in care and decision-making; and collaboration -- not just at the clinical level, but in changing and improving the health-care system.

There is no one formula for FCC because it's based on conversations between patients, families and professionals about what matters at a particular hospital or unit. It has to work in your unique environment and culture. It's not an "add on" but how the organization thinks and operates.

In FCC, the priorities and choices of families drive the delivery of health care. In contrast, we often find the system driving practices (caregivers design it so it works for them); a focus on 'treating' the patient, but not in the context of a family; or a family-focus, where interventions are done "to" and "for" them, but not "with" them.

When families are recognized as equal partners, you get the best health outcomes.

FCC needs to be the strategy and framework for how you improve safety, quality, experience of care and cost-efficiency. It needs to be explicitly stated and part of the strategic plan.

It's not a place or destination, but an ongoing journey.

We must constantly ask: "How does this look from a patient/family perspective?

For example, if we recognize families as partners, we take down signs that suggest otherwise: e.g. Stop! All patients must see nurse first. Please sit on bench until called by nurse.

Families are not visitors and are welcomed at all times. We do not have visiting hours.

One hospital found it saved $1 million a year in litigation fees after it embarked on an FCC culture that promoted partnership and transparency.

"Get started before you're ready." There is no end point, and the sooner you get started, the better.

Here's an example of some patient- and family-centred language used at one hospital in a brochure:

You're #1. We're in a partnership. Involve family in your care.

Too often we have one-way conversations with patients/families.

There were powerful parent speakers who shared positive and negative experiences. One mom described how devastated she and her husband were when they learned their 5-year-old son had to have surgery related to pneumonia after he had endured numerous serious heart surgeries when younger. "The nurse recognized how difficult it was for us and she said: 'Get in bed with your son and you can ride with him to the OR and stay with him till he's asleep.'"

A dad spoke about the difference it made when a doctor openly explained that his adult son was in a coma because he had been given morphine at five times the necessary concentration. "I was stunned that they would tell us. They apologized for the error, and very genuinely. The fact that they disclosed turned us from enemies into allies. We were brought together."

The same dad shared how crushing it was when a brain specialist came to tell them that their son had no brain activity: "He said: 'There's no way. He's as good as dead.' That was a little too blunt and gruelling to be able to absorb."

The same dad spoke about how another physician gave the same news, but in a compassionate way: "She was a parent and she tried to relate to us as parents and said: "The information is not what we all had hoped for."

Personal patient, family and professional stories are the building blocks of FCC. Tell honest stories, we heard, the good, the bad and the ugly.

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