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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Durga Tool #6: Synchronicity, Luck or Fate (whatever it is, I’ll take it!)

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  — my nominee for patron saint of special needs parents.

Well, it’s official. The blood test results are in and my son does indeed have a new gentic diagnosis as I wrote about suspecting a couple of months back. It feels weird. I’m not going to go into the details of which arm of which chromosome has been duplicated or deleted here because what interests me more is the universality of the experience of parenting a child with special needs, not the symptoms or their specifics. More unites it than divides it.

What I’ve been reflecting on instead is the event that made this diagnosis possible: the mother of boy who also has this incredibly rare syndrome happened to be sitting in the same waiting room of the same office at the same moment as me and my son. Despite years of being examined, poked and prodded by experts, it took another mom just a moment to look at my son and see some spark of recognition that led us to the truth. A different doctor, a different day, a different area in the waiting room, and we would have spent who knows how many more years in the dark. Do you have chills? I do.

Some people would call it Fate or maybe even Divine Intervention. Out of all the appointments of all the neuropsychologists in all the suburbs of the world, that we should meet is such a statistical improbability that only a divine hand can have played a part. “Things happen for a reason” is a common mantra of special needs parents and I suspect a lot of folks would say that to us in this instance as well.

Others might call it Coincidence and chalk the shivers that are still running up and down my spine to apophenia, or the human propensity to see connections between two unrelated events. I mean, it’s not really that odd that we’d be seeing the same doctor (there aren’t that many of them, probably) and the appointments involve multiple long visits. The chances that we would meet seem small but aren’t impossible.

Still others who fall in between the two extremes of the religious-skeptic spectrum might give credit to Synchronicity, or meaningful coincidence. They might even go so far as to say I attracted this mom to using Synchronicity; just weeks before, I had become very clear about wanting a rock-solid diagnosis for my son, re-arranging my life to focus on his needs, and trusting that the answers would come.

Who knows? Who cares? Whether it’s because of some divine conductor or damn good luck, I’ll take it. While it would be nice to have a definitive answer about the big questions of life, I’ll settle for the little truths. Certain ambiguities — like whether there’s a force out there looking out for me — I can handle. Others — like having a proper and accurate diagnosis — not so much.

P.S. I love a good Coincidence/Fate/Synchronicity story. Share one if you have it!

Plate techtonics

I’m on shaky ground this week, dizzy and disoriented. I can’t find a linear thread here so I toss out all these puzzle pieces hoping to make a coherent picture in the end.

Last week I jealously listened to a couple of parents on a panel share their memories of receiving their children’s diagnosis of a particular genetic syndrome before or at birth. Their stories triggered memories of my own years of confusion and worry when my child with medical, cognitive and developmental special needs had no diagnosis or prognosis, only assurances to wait and see. Nothing like their experience of having rock solid information, a roadmap, a sense of place even.

Chronic limbo left me unmoored during those years. I had two mental tapes, the public one which chanted “he’s fine, he’s doing great, wait and see, he’ll catch up” in unison with the therapists and teachers around me, and the private one, darkly creative, the one that read or heard about the worst cases of horrible care and outcomes for adults with disabilities and inserted my gentle, vulnerable son’s image into each one.

In the special needs parenting world, talk often turns to the need for acceptance. Accepting our children, accepting our challenges, accepting reality on a very basic level to simply exist helps us meet it with wisdom and discernment instead of running away from it in fear or kicking it away in anger. Without a clear sense of what was actually going on, acceptance was elusive for me. Acceptance and proper diagnosis, at least in my experience, were connected, and one couldn’t come without the other.

A few years ago my son was given a label, a diagnosis based on the appearance of his symptoms. The mothers on last week’s panel talked about how they both remembered the exact moment they receive their child’s diagnoses–where they were, what they smelled, what song was playing on the radio when the call came in or the information was revealed.  Our diagnosis was never like that. It just evolved over time based on new symptoms as they appeared, a name of a syndrome followed by a question mark which faded over time until it was nearly invisible.  It wasn’t a perfect match, but simply getting a label enabled me to get unstuck and move toward acceptance and advocacy. With the diagnosis came a whole new tribe of folks to talk to, new access to research, to resources. It felt good to stand on ground that wasn’t exactly solid, but swayed just gently and rhythmically enough to make it look like I was dancing.

A few moments spent on the website of a genetic syndrome support group this week brings me face-to-face with photos of a boy who could be my son’s identical twin. The same eyes, the same jaw, the same nose, even the same expression. Another click of the mouse and there’s another one. Brothers from another mother. With a deep sense of knowing, like cylinders in a lock clicking into place, I see my child in the list of symptoms where only a year ago I could see no strong resemblance. It’s hard to explain how. New symptoms have appeared, new behaviors have been identified. But this is not our genetic syndrome, not our diagnosis. A different one, a rarer one, with a whole new set of symptoms, a whole new tribe, a whole new language, a whole different place altogether.

And the ground begins to shake yet again.

The upside of being labeled

Yesterday we spent the day with what I affectionately refer to as our “tribe” – a group of families who all have a child with the same genetic syndrome as our son. We hung out, had lunch, chased kids, talked shop, gossiped about doctors, shared resources, marveled at similarities and empathized about shared challenges.

Although my child with special needs is nearly nine years old, we didn’t become members of this tribe until about two years ago.

I refer to our pre-diagnosis years as our “Whack-a-mole period,” when we had enough random symptoms to know that our child probably had some sort of medical syndrome, but nothing that appeared on battery of genetic tests for the usual suspects and not enough symptoms to qualify him for any clinical diagnosis.*

At each annual checkup I would brace myself as his pediatrician scoured his body for new and exciting symptoms. Shouldn’t his fontanelle be closed by now? Let’s go to a neurologist. Is that a heart murmur I hear? Quick, to the cardiologist. Aren’t those kidneys too small? Let’s call this nephrologist. Trouble chewing? Let’s go to Ear, Nose and Throat folks. Or Gastro-intestinal. No, let’s do both. Oh, and let’s not forget the therapies — speech, physical and motor. Let’s just spray and pray, cover all of our bases.

Knowing what your syndrome is can be helpful because it lets your doctor know what else to look for. But we had the most vigilant doctors in the city known for vigilant doctors and I wasn’t worried that we were missing any symptoms. Even without an over-arching diagnosis to act as a treasure map, all of the symptoms were being identified and treated. Who needs a diagnosis? It’s just a label, and we’ve been raised to see labels as limiting, so who needs that?

Besides – a diagnosis, I was told, doesn’t often give a prognosis or helpful idea of what to expect for the future. Two people with the same genetic mutation can often experience wildly differing symptoms; even if they have the same symptoms, the severity of the symptoms can differ from nearly undetectable to life threatening.

Eventually though, as new symptoms appeared, my child did receive a label for his particular constellation of features. As predicted, getting a
particular name for his combination of symptoms did not really give us any meaningful prognosis, and it didn’t reveal any other symptoms – apparently my pediatrician is pretty good!

I’m not leaving out the actual diagnosis in this post and on this blog to beobtuse, but because it’s beside my point.

The point is: because of the diagnosis, I have a tribe! On-line or in person, on a list serve, on Facebook or at an international conference, there are some people who share an appreciation for my child’s mysteries and gifts, and I care about theirs.

After our family gathering was over yesterday, three of us moms hopped in a car and drove across town to visit another mom in our tribe whose daughter is spending more time in the hospital than any child deserves. If you lined our children up beside each other, you probably couldn’t even tell that they have much in common. But here we were, together in spirit always, in person for the day. Without that label, we wouldn’t have been.

The label does matter. If not for any medical reason, a diagnosis helps parents connect with other parents.

To all those folks out there who are raising special children while waiting for a diagnosis – I leave this blog anonymous especially for you. Maybe while you’re waiting for a definitive answer, you can join my tribe. Hopefully the medical folks or the therapeutic experts can cover the symptoms while you wait. But don’t let them tell you a diagnosis doesn’t matter. Maybe it doesn’t matter to them – but it does help you find support. In the mean time, I’m listening.

*For the interested lay folks out there, there are two ways to receive a diagnosis of a syndrome: one can have what’s called a genetic diagnosis, where blood is drawn and taken to the lab and a mutation is found on a specific gene; or one can receive a clinical diagnosis, where a person exhibits enough, but not all, of the possible symptoms associated with the syndrome. Not all genes of all syndromes have been identified, so often a clinical diagnosis is the best one can hope for.