Look Ma, no hands!

I sort of learned to ride my bike with no hands this week. I say sort of, because it’s really only been a few moments of what felt like flying, nothing mastered, but a sense of progress anyway. Seeing as I’ve been riding a bike for over 30 years, any new skill at this point is remarkable and surprising.

The urge to let go of the handlebars came during an unusually long bike ride that offered up a unique combination of mania (the vineyards! the ocean!), seething neck pain and moments of boredom (did I mention it was a very long ride?).

As the miles ticked along, I realized that riding with no hands required both supportive internal and external conditions. Internally, there was a certain sense of balance (leaning too far back or too far forward just didn’t work) and a commitment to the process–a fearlessness, as silly as it sounds. Meanwhile, the perfect combination of a level path, no wind, and a lack of oncoming bicyclists also seemed an essential part of the process.

I have been riding with no hands when it comes to special needs parenting for some time now, ever since our huge move has had my attention elsewhere–getting a job, a place to live, a dog, converting recipes into metrics and Celsius. With so much to take in, I took my hands off the handlebars, trusting that the people around me would keep us safe (a correct hunch), that my mom detectors would sound even if 99% of me was caught up with figuring out the recycling rules of my new homeland, that I would take the handlebars again when it was time.

I have been here before, and I know many other parents of children who need special medical, behavioral and recreational support who have too. We’d like to think of ourselves as able to be fully focused, fully on, 24/7/365, and so would the people who help us. But we can’t. Sometimes we just need to let go. Sometimes for a day, sometimes longer.

Call it what you will–neglect, self-care, or coasting. Whether we beat ourselves up over it or celebrate it, I think it is a major part of this parenting process, and one that is rarely referred to. Society likes to label us as either “disengaged” or “super mom.” These labels hurt us all. Life is not so binary.

I’m glad I took the break. We got to develop relationships with new teachers and others without having them feel like we were constantly evaluating them. And now that there’s less “new” and more “life” in my “new life,” I am better able to lean forward, grab the bars, and hunker down for the next part of the journey.

I would love to hear from others about how they toggle between holding on and letting go of responsibility and engagement. I think we owe it to ourselves and those too afraid to both take the handlebars or to let go of them to talk more openly about how we sustain ourselves.

Advertisements

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.

 

 

Detoxing from crisis

We’re hitting the one year mark since our big trans-atlantic move. Coming upon milestones nearly every day this week, the first anniversaries of selling the house, leaving the state, saying good-bye and leaving the US altogether, I couldn’t help but get sentimental, sad, celebratory and relieved. Sentimental and sad for the people who are so far away now, and even for the things—good chewy bagels, NPR on the car radio, my garden. Celebratory and relieved for making it through the transition if not gracefully, then at least with scrapes that will heal clean. We have a new home that we love, a rekindling and creation of relationships, and work we enjoy.

There was one feeling that caught me off guard this week: boredom. Maybe not actual boredom, but fear of it. The past year (and the months leading up to it) have been stressful, that’s true, but there has been something decidedly meaningful about this time as well. Priorities have been clear, we’ve come together closer as a family like never before, the task of putting one foot in front of the other just to get through the day has been, in many ways, satisfying.

We have been in crisis. And I am good at crisis. As a parent of a child with special needs, I’d have to say I feel comfortable there. After years of wishing to be done with the drama of crisis, recognizing a pang of nostalgia for it makes me stop and think.

When my son was younger, he had several stints in the hospital. Everything non-essential was put on hold — work, mowing the lawn, opening the mail, returning non-urgent phone calls — while we focused on keeping him comfortable and supporting his healing. Everything was so clear, simple and focused, exactly the way I think most of us wish our lives could be these days, but of course without the crisis itself.

Dr. Suzanne Koven wrote movingly in the Boston Globe last week about the unexpected upside of illness in families in her piece “In Practice: Illness and silver linings.” “What starts out as a calamity becomes woven into a person’s identity, and their family’s — and sometimes even enriches them.”

Crisis has been such a big part of my own enrichment, like the fire of an iron forge. The calamity is exhausting and scary, but if one is lucky enough to get through it, it is meaningful. So much so that if I’m not careful, it might be tempting to create crisis when there is none.

The trick, of course, is to build a meaningful life without needing the drama to be present in order to do it. Easier said than done. But a goal worth pursuing and a boredom worth welcoming.

I’d be curious to hear what others think about how crisis makes them feel. In the mean time, I’m going to sit and do nothing for a few minutes.

Playing out on the street

The two little girls next door ran towards me as I watched my son ride by them on his truck out on the street last night. Nearly out of breath they asked, “What kind of sickness does he have?”

A searing red heat flared up in me. I never know exactly what to say in these situations, but I do know enough not to answer right away, to take at least one deep breath while the adrenalin rush subsides. When I get in full Mamma Bear mode I want to lash out at these girls who I had never even met, but from experience some voice in my brain reminded me that while tempting, shaming them would serve no purpose than to leave me feeling like a jerk later on.

After a moment, I said, “Well, he doesn’t have an illness, but he does have a syndrome.” (Not my best response, but they have been way, way worse, let me tell you.)

They asked what that meant. Shifting gears away from the genetics lecture, I told them that just because someone is different doesn’t mean that they’re sick. And besides, we’re all different in some way. “But we tried to talk to him. We asked him what was wrong with him…” (seriously, doesn’t anyone teach their kids manners anymore?) “and we could hardly understand what he said. He just talked about the bus coming.”

“Alright, buddy!” I thought to myself. You know you’re not a typical mom when you’re psyched that someone can understand your child, even if it’s his response to a conversation he had with someone else three minutes earlier. And then my heart broke realizing that he was really trying to have a conversation with them but that they couldn’t connect.

We hobbled along through the rest of the conversation, me pointing out that we just moved here from the US and that my son, like the rest of us, was still mixing Swedish and English words, tossing in that weak platitude about everyone being different once more like a Hail Mary pass, before the girls had had enough and returned to their part of the street.

The fire that flares up isn’t directed at these girls. Possibly a little bit at their parents, I’m ashamed to say. But mostly at the reality that my son is growing up different in a world for which differences of many kinds means “sickness.” Where different means “I don’t have to see you as a person.”

I’m not suggesting we shouldn’t notice difference, that we shouldn’t be curious about it, try to understand it, or even to appreciate it. That’s not diversity, that’s denial. But what if we could look at others and notice the similarities first? “Here is a person,” we would say. “She has loved like me, bled like me, struggled like me, laughed like me. And by the way, her hair is curlier than mine.”

The fire isn’t just an anger. It’s a sadness that my son is growing up in a world in which the main question it is asking him is “What is wrong with you?”

What will it take for this to change? How many years or even generations of retail, one-to-one conversations will we have to have? If last night is any indication, we will be waiting a long time. Is there any way to speed this along? Where do we find the energy and courage to keep at it, when it would be so easier to go inside and never come out to play again?