Durga’s Tool #552: SBAR

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage.

When you are parenting a child with special needs, learning how to communicate clearly with teachers, doctors and other professionals is a critical tool. Good communication helps the person we’re trying to talk to understand all of the facts of the situation as well as what we need them to do. It’s not that they don’t care about us or want to rush us, but sometimes too much information makes it hard for them to know how to help.

One helpful communication tool health care professionals use is called SBAR. It’s a standardized way of talking about a patient’s situation quickly and clearly. It works just as well for parents when we are talking with professionals about our children.

SBAR stands for Situation, Background, Assessment, and Recommendation, and it is exactly what it sounds like. Here is a description of what a conversation might look like using SBAR.

Situation: Briefly describe who you are and what’s going on. “My name is Mrs. Smith and I’m calling about my son, Jamie, who I am concerned about.”

Background: Briefly describe the relevant key points about the person. “Jamie is nine years old and has a cognitive disability and anxiety. He has trouble communicating verbally. For the last two days he hasn’t seemed like himself. This morning I noticed him pulling on his left ear. I took his temperature and he has a fever or 101. I gave him some ibuprofen and it seemed to make him more comfortable and his fever went down.”

Assessment: Describe what you think this means or what you think should happen next. “I think Jamie has an ear infection.”

Request: State what you would like the person you are talking with to do. “I’d like your advice on what we should do. Do you think we should come into the office or is there something we can do from home?”

The Empowered Patient has a free SBAR handout that can help you prepare for a phone call, when you have a concern in the hospital, or when you’re getting ready for an office visit using the SBAR technique. Check it out! It’s simple and can help make sure that you are heard and that you or your loved one gets the attention they need.

The SBAR technique can be used in non-medical situations too. I just used it to call my school district with a complicated question about their after-school policy. Normally, I’d give too much information about some things but still forget to say my name. Using this technique, the phone call was over in two minutes and I felt like it went really well.

 

 

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Mi casa es everybody’s casa

I am sometimes asked what it feels like to share so much personal information on this blog. After years of raising a child with special needs, I can honestly say that privacy is something I barely remember.

I know lots of special needs parents who probably feel the same way. It didn’t happen overnight. I was a private person once. But like a the proverbial frog in a pot of water who doesn’t realize that he’s slowly being boiled, my sense of privacy has slackened without much notice.

For me, it probably started with a Home Visit, the sine qua non of childhood intervention. A nurse, a social worker, or an intake coordinator, likely from Early Intervention or other state program, came to my home, sat next to me on my sofa to ask a few questions. For this visit, I probably picked up the house, or at least the living room, and maybe even put on a pot of coffee.

Fast forward a few months or years, and I find myself giving out a key to anyone who asks for it or simply yelling “come on in!” whenever I hear the door ring. After the 100th visit from the speech therapist, occupational therapist, physical therapist, developmental specialist, nurse, school psychologist, agency evaluator or personal care attendant, I realize I have stopped brewing coffee, stopped running around to pick up, stopped slapping on some lipstick because I just can’t keep up the facade, and frankly, I realize that they just don’t care. I tell myself that they’ve probably seen much, much worse than that pile of unfolded laundry on the dining room table, and anyway, it’s clean, so it’s nothing to be ashamed of.

It’s not only in my house that my sense of personal dignity gets “loosened up.”  The hospital stays are particularly challenging to maintaining a sense of dignity. I find myself woken up at 6:30am by an army of white-coated people from an uneasy sleep in a fold-out chair next to my child’s hospital bed. Wiping the drool from the side of my mouth, directing my comments off into a corner so as not to knock them unconscious with my morning breath, I curse myself for not sleeping with a bra on under my pajamas while I pat my head, trying to visualize how bad my case of bed head is. But at the same time, I just don’t care.

I have even gotten used to having people in my proverbial “space” or as my daughter would say, in my “business.” I answer questions about my son’s health and development, my pregnancy and delivery, my stress level, my income, my relationship status, my choices, my actions and my inactions. It feels like I am being judged, and in fact, I am. It is an invasion of privacy but I offer the info willingly. It is the price I pay in order to receive the services and resources that will help him thrive.

The details of my life, my story, becomes a currency that I offer willingly in the service social change and reform as well. In meetings with political staffers, on task forces and in board rooms, I share some personal details with no regret because I have learned that while data drives the discussion, it’s the personal stories that keep everyone at the table. I could talk about theory and percentages until I’m blue in the face, but it’s often a small anecdote that drives the point home.

Even out here in the blogosphere, it’s the stories that connect us even though we might have never met.

So this week, when I invite several personal care attendant candidates in for interviews and host two medical students to teach them about raising a child with complex needs, or even when I hit the “publish” button on this blog post—it won’t feel weird. I’m used to it. Come on in.

I get by with a little help from my friends

Several years ago at the playground of our integrated preschool, a bunch of my mom friends were discussing the pros and cons of the kindergartens they had the option of sending their kids to the following year. Since my son had only one choice the following year, the self-contained classroom that I could either take or leave, I observed silently and jealously from the sidelines. When a good friend declared that all the trouble of touring and choosing an elementary school was “just the worst,” I vividly recall excusing myself to go help my son on the swings. Our friendship was never quite the same after that. I checked out. It just hurt too much to be so invisible.

As someone raising a child whose special needs impact his ability to sustain friendships with typical peers, I spend a lot of time thinking about his friendships and how to support them.

I spend less time thinking about supporting my own. I’ve come to rely on a trusted and loving circle of friends and extended family. I’m so grateful for them. John wrote it and Ringo sang it best: Oh, I get by with a little help from my friends.

When I reflect back on the past 10 years, I can see that not all friendships made it. That’s nothing particular to special needs parenting, or even parenting. Not all relationships last forever.

Some recent research shines a light on why several of my friendships couldn’t go the distance, and how I might have changed that. It also explains why some of my relationships have gotten stronger, and what might have made that possible, too.

Researchers at Brigham Young University recently released findings that for people raising young children with disabilities, certain types of social relationships are typically more harmful and others more helpful for parents.

Interviewing 40 parents of young children with disabilities, the researchers set out to answer the question of whether social relationships are always a help, or whether they might be a hindrance. Here’s what they found:

  • Relationships with spouses/partners and their other children were on the whole positive.
  • Relationships with friends, extended family and colleagues was more often characterized as negative.

There’s much to explore and discuss. But it was the factors that the researchers attributed this difference to that really caught my attention:

Since parents of CWD [children with disabilities] often receive training on accepting and working with the CWD, and siblings can receive similar trainings and support through schools or sibling networks, unrelated social networks may need sensitivity training to help families raising CWD feel accepted. Disability advocates have made broad based efforts to promote acceptance of differences (e.g., billboards, public service announcements, advertisements in magazines); however, individual level trainings may be warranted.

In the weeks that have passed since I first read this, I’ve mourned a little for the friendships that didn’t last mostly because our society doesn’t yet raise folks to be naturally accepting to disability.

I realized too that when it comes to all I know about inclusion and celebrating difference, I was not born this way. I had to learn. So did my husband and my daughter and my mother and my father. And if I wasn’t born knowing this, how can I expect that others would?

The researchers closed with this cautious recommendation:

Parents and family members of CWD may benefit from educational interventions regarding how to teach others in their social networks about disability issues.

OK, then. We need to be taught how to teach others about disability. Looking back on my friendships that have thrived over the past 10 years of raising my child, I can see what made a difference. Connecting with other special needs families is a natural step, as they too are being taught to accept my son when they learn to accept their own children’s differences. Writing this blog has given me the chance to share my experience with friends and extended family whose own knowledge and experience delights me. Modeling my own appreciation for my son’s differences with his peers (and my own) has also made a difference. Making the effort to include him in our community has also given folks a chance to learn something new.

What has worked for you? Which friendships have thrived and which have withered? What are some things you’ve done to strengthen friendships during early childhood? What techniques should we start to talk about as a community?

And while I’m at it, let me say to all my friends: Thank you. I’m so grateful that you’re in my life.

No Pity, part 1

I bring along my son, who attends a special education school many miles away, when I pick up my daughter at her neighborhood school’s after-school program.

Since he started attending the far-far-away school a year ago, the ties that bind him to our neighborhood are snapping, one by one. Granted, they were never strong, as he’s always been in a self-contained special ed classroom. But hanging out in the after-school room while his sister wraps up an activity and gets her stuff together is often the only five minutes he gets on any given weekday to hang out with a typically developing child besides his younger sister or her friends, who are not his friends.

Yesterday, he and I were approached by a young boy, probably just his age, who looked at my son, turned to me, and asked, “Can he talk?” Assuring him that he could, I facilitated a little introduction. Stimulated by the bustle of the activity in the room, my son had a hard time making eye contact and speaking in a voice loud and clear enough to be understood by the boy. “Why does he talk like that?” the boy asked. Slowly and gently I replied “Well, because his brain works a little differently than yours or mine.” Piggybacking on my egregious error of talking about my son as if he wasn’t there, the boy replied, “I feel sorry for him.”

“You shouldn’t,” I told him. I corrected myself. “You don’t have to. He’s happy.”

A teacher overheard us, told the boy to go back to what he was doing. My daughter appeared, ready to go home. There was just too much commotion in the room and too much chaos in my head to know the right thing to say, so I let it drop.

Pity is just an indicator of not being aware of someone’s strengths, which in turn is an indicator that there isn’t much opportunity to get to know someone in the first place. Inclusion, inclusion…how long do I have to wait?

“Let there be peace, welfare and righteousness”

Martin Luther King leaning on a lectern. Deuts...
Image via Wikipedia

Reflecting on Rev. Martin Luther King, Jr.‘s contribution to peace  thought I’d share a blessing by Hagen Hasselbalch which I found in Earth Prayers. It so beautifully captures the open-armed ambitions of the peace movement inspired by folks like Dr. King: the desire for justice, for access, for respect for each other and the earth.

Let there be peace, welfare and righteousness
in every part of the world.
 
Let confidence and friendship prevail
for the good of east and west
for the good of the needy south
for the good of all humanity.
 
Let the people inspire their leaders
helping them to seek peace by peaceful means
helping them and urging them
to build a better world
a world with a home for everybody
a world with food and work for everybody
a world with spiritual freedom
for everybody.
 
Let those who have the power of money
be motivated by selfless compassion.
Let money become a tool
for the good of humankind.
 
Let those who have power
deal respectfully with the resources of the planet.
Let them respect and maintain
the purity of the air, water, land and subsoil.
Let them co-operate to restore
the ecological soundness of Mother Earth.
 
Let trees grow up by the billions
around the world.
Let green life invade the deserts.
 
Let industry serve humanity
and produce waste that serves nature.
 
Let technology respect
the holiness of Mother Earth.
 
Let those who control the mass media
contribute to create mutual understanding
contribute to create optimism and confidence.
 
Let ordinary people
meet by the millions across the borders.
Let them create a universal network
of love and friendship.
 
Let billions of human beings
co-operate to create a good future
for their children and grandchildren.
 
Let us survive
In peace and harmony with Mother Earth.

Peace.