More kitchen table talk

Is it possible to be a good student but a poor learner? I think so, based on my own personal experience. During my school years, good grades came easy. I was eager to please and to be praised, but unless the learning process happened simply through the mere act of being present in the classroom, I really didn’t know how to learn. It wasn’t just in the classroom that things were like this; life too dished up plenty of lessons about happiness, gratitude, generosity and the true nature of things, but unless they came with no effort on my part, they remained a mystery, like quantum physics or ancient Greek.

Lucky for me, parenting a child with special needs has helped make some great life lessons accessible to me, the poor learner. Lessons about the beauty of difference, the tyranny of ego, the gift of this precious moment, and the impossibility of permanence. Without the particular life circumstances that come from being my son’s mother, I don’t know that I would have ever really learned them. It doesn’t mean I don’t forget them sometimes (most of the time) but without him, they would be beyond my grasp completely.

When interviewed by Andrew Solomon for his book Far from the Tree: Parents, Children and the Search for Identity, (watch his wonderful TEDMED talk if you haven’t seen it), Karen Robard, whose son David has Down’s Syndrome, was asked if she wished her child didn’t have DS. She answered: “I would cure it in an instant to give him an easier life, but speaking for myself, well, I would never have believed 23 years ago when he was born, that I could come to such a point, but…it’s made me so much better, and so much kinder, and so much more purposeful in my whole life, that speaking for myself, I wouldn’t give it up for anything in the world.” It may be hard for some people to understand Karen’s perspective, but I do. Like me, Karen has a teacher in her son.

So last night my 10-year-old daughter and I were sitting at the kitchen table filling out back-to-school paperwork, and she mentioned that she had had a dream in which her brother didn’t have Coffin-Lowry Syndrome. She proceeded to tell me of the zany antics that can only ensue in a dream world. I’ve had a couple of dreams too in which he is neurotypical and I have woken up feeling shaken. I had just watched the Solomon film earlier in the day and Karen Robard came to mind, so I asked my daughter tentatively in the middle of the allergy form if she ever wishes that he didn’t have CLS. She replied without hesitation yet without insistence: “No, if he didn’t have Coffin-Lowry, I would wish that he had it. He is perfect the way he is.”

I continued to scribble away in order to keep it safe for her to keep talking, as I try to do when the subject of her feelings about her brother’s disability come up. (My friend Susan calls “periodic check-ins,” and you never know when they will happen.) After a few more fields and a signature I casually mentioned that it’s pretty cool that she felt that way, because some people might not see that. Not exactly knowing where I was going with my next sentence, I simply said, “I mean, it’s kind of…” “It’s not hard, Mom. You can’t blame him.”

And in her steady, matter-of-fact tone, I heard and understood that she meant that not only could we not blame him, we could not blame anyone. And the reason we could not blame anyone was that there was nothing to be blamed for. Just as she said, he was exactly as he should be. Our family was exactly as it should be. Life was exactly as it should be. And furthermore, I learned that I didn’t always really believe that, and that she knew I didn’t.

Outwardly, I continued filling out yet another form. But inside, my synapses fired as I realized that my daughter, with far less life experience than me, had already attained an acceptance that I was still struggling with. And finally, I was reminded of the biggest lesson yet: that life hadn’t put one great teacher in my family, but two. 

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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.

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Lessons from the teachers at the side of the highway

This weekend we took a trip to my husband’s family’s summer house. On the long trip there and back, we were saluted by beautiful lupines, a dramatic wildflower often found on the roadside in these parts.lupines

As the miles passed, the car seemed to shrink claustriphobically and the GPS estimated our journey home to be increasing rather than decreasing. The dog decided just then to begin wailing at the injustice of it all, my son nervously laughed at the dog’s distressing barks, and my daughter crying at my son’s laughter. Eventually we pulled over so we could all get some air on the side of the road. We reached sensory saturation and were all really stressed. Crispy is how I often describe that feeling. Of being made so brittle by the trigger of stress that one small touch and you’d shatter into a million pieces.

My daughter returned with a handful of lupines and gave them to me as a generous gift. In a moment I was transported back to my wedding day, when the lupines that my mother and grandmother picked graced the tables in the little village hall. It was a welcome liberation from the moment.

I can’t say the rest of the ride was any better though. The dog slept a bit but picked up his howling for the last 20 minutes of the ride. It felt like an eternity and the crispiness was right there with us again. The lupines flopped sadly and I put them in a small vase at the kitchen sink last night with little hope for their recovery, but too grateful to toss them in the compost.

This morning they were at alert once more. I thanked my daughter at breakfast. “Just for you, mom, right from the side of the highway.” She is getting ironic now that she is 10.

Speaking of lupines: Nancy Jay Crumbine, poet and minister who I had the pleasure of hearing preach just once but whose words have stayed with me in the form of her book I purchased from her in the church lobby after her guest sermon has also got a thing for lupines. Or more accurately, they have moved her spirit just as they did mine.

“The lupines have returned,” she writes. “How can we go about our business as if nothing extraordinary has happened? And yet, to really take it in, how can we proceed?… I am daring that many of us have such moments, not wanting to love one more thing, not being able to bear the thought of so much life so freely given, the colors too bright, the bird songs too dear, the debt for being alive too great, the dread of dying too alive.”

“Every June I ask the lupine to teach me, once again, how simply to stand still, bearing witness, being grateful, moving only as the wind suggests,” Nancy writes. Yes, please teach me.

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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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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.

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Engagement and Groundhog’s Day

It’s not Groundhog’s Day here in Sweden but that won’t stop our family from the annual viewing of the Bill Murray classic. Tonight we’ll snuggle on the sofa while Bill awakens to Sonny and Cher for about, according to the DVD comments, 1000 years or so, reliving the same day until he gets it right.

When I first saw the movie years ago, it was merely a funny, clever film with wry Murray wit and all that Andy MacDowell hair. Over the years it has become a story of engagement.

For what is engagement if not a waking up to the realization that life could easily be an endless string of days filled with despair and confusion? That we can make a difference for ourselves and those around us simply by paying attention to what the world needs and then doing those things? That when we do that, we are free?

Am I right or am I right or am I right…or am I right?

Happy Groundhog’s Day, y’all, no matter what shadows, seen or unseen, are out there.

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Durga’s Tool #329: Wonder

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.

I was at a workshop this weekend for people with special needs and their parents, learning about how to advocate. The course leader delivered a short parable that skillfully summed up a key strategy for success.

“Let’s imagine I have two aunts,” she began. “I haven’t seen either of them in a while and so I go to each of them for a visit. At one visit my first aunt desperately says, ‘Where have you been? I’ve been waiting for you to visit for ages. I’m so lonely and you never visit anymore.’ The second one says warmly, ‘Welcome! I am so glad to see you. I know it’s been years but I’m so happy we have time to have some tea and catch up.'”

The course leader encouraged us to think about what each of those visits would feel like. She went on to ask: Which visit were we more likely to enjoy? Which aunt were we likely to visit again?

And so it is with this work, that you and I will often have to meet with people to ask for their help or their support. Maybe they are gatekeepers of services for our own families, or maybe they are policy makers with the power to change the playing field for thousands of families like ours. Maybe we meet them in a public meeting, maybe we deal with them by email or phone, or maybe we find ourselves sitting across the table from them at an annual review of services.

In those moments, are we the angry, desperate aunt or the friendly, inviting one?

I think sometimes we special needs parents are getting the wrong message. We’re told that if we want to be effective, we should be the mama bear — fierce and protective. Or the victim, sad and pleading.

The course leader’s parable reminded me that I have other options, ones that actually might be more effective than anger or sadness. I can be friendly. I can be willing to meet someone half way. If I can do that, I’m more likely to get what I need, for human nature is such that we are attracted to the pleasurable and repelled by the unpleasant. That’s just the way it is.

The challenge, of course, is that sometimes we feel really righteous in our sorrow or our anger. On the surface it seems so obvious that we should be angry or sad that to be positive or collaborative would be false or self-obliterating. How can you be pleasant and cheerful when the other person is ignoring the law or hiding behind a culture of bureaucracy and complacency?

In those moments I remember the words of Parker Palmer: When the going gets rough, turn to wonder.

Wonder, as in, “I wonder what could have caused our education system to produce a policy like that. I wonder how I change that policy.” Or “I wonder what is going on with our health care system that makes this person feel like it’s ok for them to treat me this way. I wonder how I change that system.” Or even, “I wonder why I am getting so upset about this that I am willing to abandon my own integrity. I wonder why I am yelling right now.” Turning to wonder for me has often gives me the breathing room to not take things so personally, to continue to see the other person as a person even when I’d rather not.

It’s easier said than done, I know. I forget this lesson all the time. Just this morning I had an interaction with a dental scheduler that could have gone better. But if I’m lucky, I’ll get lots of chances to practice. Until then, I’ll just have to wonder what it would take for me to learn this lesson faster.

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