Tag: developmental disability

Oh, s*#t

The speech therapist sent over some new communication cards a couple of weeks ago. They are laminated sheets that contain about a dozen icons that our family can use to have better, more focused conversations with my son. Without them, there’s often whining, interruptions and repetition. With these cards, we still do all those things, but we also do a little bit more chatting about the day and our plans for the weekend, specifically whether or not we will eat tacos on Friday night. (Spoiler alert: We will.)

fredagsmys
Communication card for the weekly Swedish phenomenon Cozy Fridays, aka Fredagsmys

This particular pack of cards is aimed at older kids, now that my son is well into his teen years.skit också You can probably imagine my surprise when I see that on the cards is a pictogram for a swear word. “Oh, shit” shows a generic-ish person with a palm to the forehead. Useful for many contexts, but not the kind of language I promote with my kids.

I easily forget that my son is getting older, mostly because he’s physically small but also because he needs help with things that kids his age have figured out how to do long ago. But that doesn’t mean he’s a child in every way. Because he needs my help, it’s also easy to believe that I should be allowed to make choices about things that parents normally wouldn’t–his clothes, his music, his activities, and even his language. People with disabilities have been pointing out how society infantalizes them for decades. I do not want to be that parent, so we laugh and practice saying it together.

There are so many areas where I’m going to be pushed out of my comfort zone. Swearing, friends, alcohol, sex. His body is changing, his needs are changing. He’s getting older, and so am I. Oh, shit.

I came in last. And it was great.

I ran a 10 km road race this weekend, and I finished dead last. And it was great.

I wasn’t expecting to win. When I registered, I figured that like in the many festive road races I’d run before, I’d simply blend in with the pack, my physical mediocrity invisible among the bell curve of humanity. It’d be a great reason to get some good runs in early in the season, and I’d start the summer off in better-than-normal-for-me shape. This one would be even better because it was passing through my neighborhood, even traveling along my normal loop at certain points, so it was surely convenient.

Showing up at the starting line to pick up my number, I learned that there were just 60 of us, nearly all of whom were wearing such technical gear that it was obvious that I was out of my league. Incredulous that things could be this bad, I laughed it off, but within about two minutes of the crack of the starting pistol, I could see that the my fellow 59 runners and I were parting company.

This put me immediately in an interesting psychological state. Because I really, really hate being last. I hate simply being bad. As a child, if things didn’t come really easily to me, I’d quit. Ballet, softball, guitar, honors math. So I excelled at everything I did, because I only did the things at which I excelled. Carol Dweck calls this fixed mindset, in which we believe that our character and talent are static and determined early in life. Clearly it’s less preferable to growth mindset, a viewpoint that thrives on challenge and sees it “not as evidence of unintelligence but as a heartening springboard for growth and for stretching our existing abilities,” (as written in Maria Popova’s excellent summary of Dweck’s research.)

Being bad at something, especially sports in a group, has in the past awakened a deep sense of shame, and sure enough, shame planted itself on my shoulder for a good view of the unfolding events about 500 meters into the run. Lately, I’ve also started noticing that when I’m ashamed, I lash out with blame. That was there too. Blaming the organizers for doing such a pitiful marketing job, blaming the other runners for being so gifted, even blaming the receding glaciers for leaving the landscape so hilly. This very short animated video of  Brené Brown’s wisdom on blame sums up how blame is simply another attempt at escaping an uncomfortable emotion.

It would have been normal to quit, but I guess all these years of listening to people like Jon Kabat-Zinn and Pema Chodron have had some effect. They’re always saying stuff like “mindfulness is simply the moment-to-moment paying attention to what’s happening  without judgement” and even more simply: “Don’t bite the hook.” And by that I have understood that when an uncomfortable feeling shows up, there can be some value in not trying to turn it off, and instead just observe yourself feeling it. Easier said than done. But at some point during Kilometer 1 of this humiliation, it struck me that this could be an opportunity for some major not biting of the hook. I could allow the anger, blame and shame to rage on the inside, while my legs slowly carried me along.

The kilometers passed, and I fell further and further behind. Every several hundred yards, there was a volunteer stationed to cheer people on and make sure we didn’t lose track of the trail. Each such encounter was a renewed opportunity for embarrassment, and I imagined that they were all in communication with each other about this pear-shaped, middle-aged, out-of-shape lady who was wasting their Saturday evening. I apologized to each of them for being so slow and thanked them for waiting, grateful for the ones who didn’t jump in their car and dash off seconds after I passed.

Eventually, my thoughts turned to dropping out, and I started formulating a plan about how I would take off my number and hand it to one of the officials at the next check-in. The problem was, I lived near the finish line, and I’d still have to run the entire way home anyway. I found myself thinking that I’d run just a little bit more, and hit a rather long stretch during which I was on my own.

I was still feeling pretty crappy but noticed that other thoughts started showing up. “Nothing changes if nothing changes,” I watched myself think. Dropping out would simply reinforce that I was a quitter. Then I thought that while it might feel terrible to finish last, it would definitely feel worse not to finish at all. At the top of a hill I started thinking about what kind of message would I be sending to my daughter if I dropped out, and what a gift it might be to show her, just once, that it was ok to be bad at things. I thought about my son and how, because of the way society is rigged for people without his cognitive and physical disabilities, he often comes in last in life. I suddenly appreciated his grace and dignity in the face of constant messages of not being good enough. Could this experience give me insight into his experience?

I thought about the people who weren’t running but had wanted to. Maybe there was someone who would see me shuffle by and think, “If she can, I can.” And finally, I started questioning my projections on the volunteers. Why did I assume that they were bored and impatient for me to finish? Maybe they deserved better.

There was a water break at around Kilometer 6. I was out in the middle of the woods with two teenage girls who made me feel like this was the most fun they’d had in weeks, confirming my theory that projections are some powerful magic. I asked them if they’d ever been last. Yes, they said. Any tips? Well, one of them said, you’re doing way better than the people who didn’t sign up. And at that moment, I knew I’d finish.

All of a sudden, I was at Kilometer 8, then 9. For the last 100 meters, I was cheered on by everyone who had volunteered at the registration and the starting and finish line; it felt like there were more people than had run in the entire race. I expected it to be the stake in the coffin of humiliation, but some knot has loosened, and it was actually great. One of the shy teenage boys who I’d seen out volunteering on the course even came up to me and said that he thought I worked really hard. Not sure it was meant as a compliment, but I took it as such. I think it was.

And suddenly…I was done. I looked down at the medal that someone has slipped around my neck at some point and realized that nowhere on it did it say that I’d finished last (by a lot). Maybe it was the endorphins or the dehydration, but I took this selfie and realizedIMG_6455 that the only thing I felt was great. Simply watching the shame and the blame unfold without reacting had released some deep behavioral patterns and habitual thoughts, like touching a soap bubble with my finger.

So this is what coming in last feels like. My legs are sore, but my spirit is soaring. I can live with this.

Turning the page on reading

I love reading. I love reading fiction, being transported to worlds real and imagined, past, present or future. I love a good memoir, how I get to slip inside another person and see the specificity of their story and universality how our stories are alike. I love reading poetry, especially the kind that aims a tight spotlight on just this moment and reminds me in a few short lines of the link between the mundane and the divine.

At age 13, my son still struggles to say the alphabet correctly all the way through. He has spent hundreds of classroom hours matching, tracing, cutting out, pasting and pointing to letters and words, without much of it sticking. I expect that by adulthood he’ll have a number of site words that he’ll recognize, like his name or words like “exit” or “stop” (or “X-box”) that have a context and format that make it possible for his brain to transform lines and shapes into meaning. But novels and texts are unlikely.

The thought that he won’t have the opportunity to experience reading leaves me sad. As a person who finds wisdom, adventure and joy in reading, coming to terms with my son’s situation has been…well, it hasn’t.

A couple of weeks ago, I was talking with someone who happens to have dysmelia—he was born with only one hand. I haven’t known him long, but long enough that I don’t notice his physical difference anymore. If anything, I simply note how graceful he is in the way he moves around in a two-handed world. He is retired now, and it seems to me he’s had a satisfying career and enjoys a rich and enjoyable life.

He was talking about how he is sometimes contacted by parents who have recently given birth to a child with dysmelia; it’s clear, he explained, that the parents are grieving for experiences their children will never have. But this grief is often based on their own attempts to replay their own childhood in their minds and attempt to live it one-handed, and that often just doesn’t work. He tells these parents that he has participated in research in which his left hand was held up to a mirror in order to trick his mind into believing that he had a right hand; the fMRIs taken while he looks at the mirror show without a doubt that the place in his brain that should light up when he thinks about a right hand has simply been assigned a new task. It has been filled, he chuckled, with more sensible things. Because he has never had this hand, he can’t say that he’s “missing” a hand or that he misses it. And his life, while not without challenges, has been just fine.

I came away from our meeting with my head spinning. I thought about how other people experience immense joy because they are great at physics, or speak Spanish, or play the piano. Do I ever feel sad that I can’t do those things? Not at all. I take pleasure in other things that I’m good at or enjoy. So why do I persist in grieving for my son’s relationship to reading, simply because I enjoy it? Could this feeling be not really grief, but pity? Am I actually insulting to my son and his gifts and his reality by feeling sorry for him instead of helping him find wisdom, adventure and joy in other places? It suddenly seemed so.

I opened a bookI wrote this first draft this morning. This afternoon someone posted this picture on Facebook, with the comment about how this so perfectly captures the magic of reading. “I opened a book and in I strode; now nobody can find me.” The sentiment has definitely been true for me. I noticed that the place in my gut that would have normally twitched was actually still. And that’s not something I could have learned in a book.

Sorry-grateful, regretful-happy

“You’re sorry-grateful,
regretful-happy.
Why look for answers
where none occur.”

–Steven Sondheim

There’s something unfolding and I’m so ambivalent about it that I don’t even know how to start this post. That happens sometimes when I try to write about tricky feelings. Usually the act of writing provides a clear point of view, enough that I can scroll back up and re-write a couple of sense-making introductory sentences. If you’re reading this, it’s safe to assume that my ambivalence remains.

Two-plus years into life in Sweden and we are tapping into a service that didn’t exist for our son, with his complex developmental disabilities, in the US. It’s affectionately known in Swedish as kortis, which loosely translates as shorty, and is literally short for korttidsboende (short-term residence).

Kortis offers kids with significant cognitive, behavioral or physical disabilities a place to spend some time away from home, usually a weekend a month, a week or two during the summer, and sometimes one or more nights during the week depending on the person’s needs and family situation.

It’s good for a bunch of reasons. Social workers refer to this service as respite, which is so uncommon in the US that if you’re like me, you may need help figuring out how to pronounce it. (It’s RESS-pit.) For us, that means the chance to sleep in, move more slowly, finish a thought, grab a daytime movie, to catch up on home improvement projects, and spend some uninterrupted time with our daughter. (Yes, I’ve been daydreaming.)

The benefits for our son are many; he doesn’t normally get sleep-overs or sleep-away camp, but suddenly he’ll have weekends filled with outings, movie nights, good food and time away from his sometimes over-protective, boring and/or exhausted parents. He’ll get the chance to practice skills that he’ll need when it comes time to move away from home, too. Most importantly, it’s a stimulating change of scene for a kid whos world could stand to be a bit bigger.

And in our new life, kortis is available to us, close to home, with plenty of qualified staff. And it’s free.

Even so, there’s a lot I don’t feel good about. For starters, there’s the terror of letting my more-vulnerable-than-average kid spend a prolonged amount of time with adults who aren’t family. Do I need to get into the depths of that terror? Compound it with how easy it is to feel like a failure as a parent when you finally admit that in order to get your family life to work, one of your kids will spend time away from home.

But after two years of telling the agency powers that be, “thanks but no thanks,” we finally have to admit that our son has needs that we can’t meet. We’re resolved to make it work.

It’s been several months of slow transition: first our tour of the kortis house, then a meeting with the in-take coordinator. Then our son had dinner at the house (once with us tagging along, then once without us), and a first attempt at a sleep-over that ended with a call home at 11:30pm when our son was too excited to fall asleep. Tonight my husband is camping out with him at the house, in an attempt to get him through the night. Several more baby-steps may be needed until he adjusts. Until we do too.

Deep down, I know that it will be great for all of us. But for now, I’m sorry-grateful, regretful-happy. That kortis is an option for us. And that we need it.

Wait for it

I was thrust out of sleep last night for a few brief seconds into total free fall, just barely this side of consciousness, unable to recall where I was, who I was, why I was. For a moment I struggled to orient myself in space and time, until I heard myself say in a calm, competent voice: “Wait for it.” hyperspaceA total sense of trust washed over me, a sense of excitement even (who might I be?) until finally I slammed back hard into the labels and perceptions of me—my name, my place on the globe and in my bed, a knowing that today was Tuesday and that I’d go be going to work in a few hours, coffee first. Then it all receded and I slipped back into sleep.

My son turned 13 this summer. As a parent, there is a sense of barreling through the unknown now. After so many years of trying to make a childhood, it’s already time to start building an adulthood. We leave the Beginning behind, and head into the Middle. I know it’s a complicated process for all parents, but this is different, or maybe just a heightened, hi-octane version of the same thing. More intentionality, more paperwork, more letting go whether or not if feels like it’s time. For a child who is so far behind his chronological peers in so many ways, he must begin to prepare for his adulthood long before most the others. And we are here to help him, making decisions about which skills to focus on, which goals to scratch off the list. Mostly, it’s about accepting, for better or worse, that adulthood is coming, and even though he may need help like a child in some ways forever, treating him like one isn’t what he wants. Even when it is, it may not be possible.

What I wouldn’t give to feel that sweet sense of safety I had this morning during this process. To trust that the answers will come and “embrace the questions” of this transition. To perceive the unknown as no problem, exciting even. But I’m not there yet. I guess I’ll have to wait for it.

39,000 feet

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

-Chaz Ebert to her husband Roger Ebert, on the relapse of his cancer. Life Itself (2014)

I am writing this somewhere between the US and Europe, 39,000 feet above the Atlantic Ocean, the churning vastness that has been the threshold for my personal reboot many times.

I wasn’t intending for this particular crossing to be more than a chance to eat peanuts and catch up on movies that get ruthlessly vetoed on family movie night. I’ve just finished watching Life Itself, the Steve James documentary about Roger Ebert, the beloved movie critic who influenced not only what I watch but how I think about films.

Steve James and his camera enter Ebert’s life after Ebert had already embarked on a journey with cancer, capturing the unfolding of a relapse which ultimately led to his death during filming. There’s much to say about the movie, but the thing that has me sitting here paralyzed in the dark airplane cabin for the last several hundred miles is what Roger’s wife and caregiver Chaz told Roger upon the cancer’s re-awakening. She recalls for James that upon receiving the news, she offered him a deal if he would muster up the energy to for another round of treatment:

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

It hurts me to say it, but if I’m totally honest I’m not the kind of mom who was wired to easily provide my children with something to look forward to every day. Not with my daughter, who’s neurotypical, or my son, who has a developmental disability and complex social needs. Sometimes it’s even hard to know what that might be, as I wrote years ago. I’m a good mom, I think, but that’s just not the way that my love comes out.

My mothering seeps out in other ways. Some days it is simply the effort of keeping a stable, daily life going. At my best times, it has had me quitting jobs to have more time to coordinate doctor’s visits and order medical supplies. Lately it has me tilting at the windmills of injustice, tackling the inequities that leave people like my son underserved, vulnerable and sometimes invisible. I’ve been an activist for causes relating to diability and health care for several years now, doing work that takes me physically and mentally far away from our home and leaves little time and energy left for even getting dinner on the table most days, let alone creating moments of wonderment and magic. I do it in part for other families who don’t have it as good as we do, but also in the hopes of creating a society that will be more able to help my son life a safe and meaningful life.

The idea that Chaz was proposing, to take responsibility for providing someone else’s reason for living—for making it interesting and delightful—made me squirm in my already uncomfortable seat. Because it’s occurring to me lately that that is exactly what I’m supposed to be doing for my son. With his limited agency and independence, I’m not sure that he has the ability to make it happen for himself. And if he doesn’t, who will? What good is the promise of a future life of meaning and joy if there isn’t one now?

In the developmental disability world, parents are often accused of not being let go of our children. But the fact is that they need us in a much more complex way than anyone wants to admit. Sometimes they need us to make interesting things happen. Or at least, hire, train and supervise the person who does. Sometimes we are their (only) friend. Sometimes that’s our fault. Sometimes it’s not.

What if Chaz Ebert’s contract is exactly the one I should be offering my son? What if instead of attending conferences and writing articles, I should be helping him look at the stars or collect shells on the beach? How do I give him the moments of wonder and delight that come so easily to my daughter? If I don’t, who will? What would it mean to take on the responsibility to create interest and something to look forward to every day? And given that that type of nurturing isn’t my nature, how do I personally sustain the energy to do that? And not just now, but maybe for years to come.

I doubt I will have the answer before I land. I plan to talk to my husband and those closest to us about how we can make a life full of wonder and joy for him. Full of things to look forward to. Full of days to look back on. Full of great days. For all of us.

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. 

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.

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.

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.