The tired tropes of special needs parenting

If you listen to or read pop culture reviews, you’ve probably stumbled upon a conversation about tropes, which are basically plot devices, themes or recurring character types. It’s impossible to tell a trope-free story; even our most basic story-telling devices are tropes, like having a beginning, middle and end, or the classic struggle between good and evil. Without them, stories are just random strings of images.storytropesbingo

When overused, tropes become clichés (Will they or won’t they?) or even offensive (“What do we do now?”). And sometimes, there are just so many of them going on at once that the result is referred to as a trope salad. Exploring tropes is fun, and entire websites and wikis are devoted to cataloging them.

When disability gets represented in life and culture, plenty of tired tropes surface. My Twitter feed was lit up last month with a debate around professional conferences that feature inspiring, overachieving people with disabilities, aka supercrips, a pop culture staple. Lately I’ve been irked by a reality TV home makeover show for a “needy families” willing to share their desperation and tears on cue so that they can be rescued by “angels” (no joke) and we viewers can feel blessed and generous. Representing disability in pop culture can be a bit of a landmine and I appreciate it when writers call out disability clichés.

As a special needs parent, my antennae are always up for tropes about parents like me. One of my first blog posts was about my love/hate relationship with Mamma Bear. I’m sure that I could find plenty of examples for clichés that I’ll just call Disengaged Dad, Super Mom, the Invisible Sibling, the Parents In Denial, and the Pity Family.

If we suddenly become special needs parents and we don’t have any other role models, there’s a risk that we actually adopt these personas. I personally auditioned for several of those roles. Sometimes I even got the part for a season or more. Award worthy performances.

Luckily, I also met plenty of parents who showed me that I didn’t need to play a cliché, because life was too complex and interesting. Parents who were strong and vulnerable. Who had their crap together most of the time, but didn’t apologize when they lost it once in a while. Who were incredibly creative problem solvers, except for that one area that was a total blind spot. These folks defy stereotyping and two-dimensionality. Just like all parents. Just like all people. Just like everyone, we contain multitudes.

Have you cast yourself in a role that was just too flat for real life? Are you doing it now? Do you know someone who is defying typecasting? How might you allow yourself to be a little bit more complex?

 

 

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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.

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.

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.

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?

Durga’s Tool #2.1: Empty space

Even at the dawn of the Durga’s Toolbox series, I so appreciated the value of decluttering that I made it a seminal tool, giving it the #2 spot.

When I wrote about it then, it was at the culmination of a pivotal year-long stint as a full-time caregiver—for my son and his complex needs, for my father who was ill and passed, and even for myself, as I worked to finally accept the mantle of “special needs mom,” which I had been pushing away for years.

The year had been one of intense change and spending time decluttering was helpful. I wrote then about “the delicious rush of the feeling of spaciousness – physical, mental, psychological and spiritual – that comes from picking an area of my home and then giving a ruthless “buh-bye” to anything I don’t love, need or want contained within it. After decluttering a drawer, a shelf or a closet, I can return for days to gaze at the generous capaciousness, not just the controlled order of the things, but the blank space between the things that reside there.”

The spaciousness brought order and hope to a little corner of chaos. Unexpectedly, it was also an invitation to the creative powers that be to send me a new calling, new professional and personal opportunities. Anyone who’s ever done a good solid clearing before knows that when you make space, the Universe will fill it. (Maybe I shouldn’t have cleared quite so much.) Within months, there was less time to keep up with our “stuff” and the piles crept back, as they are wont to do.

As we prepared to sell our house and pack for  our huge adventure and head out to Sweden next week, we’ve had to take decluttering to the proverbial “whole nother level” to say the least. A trifecta of motivators—a cheer-leading realtor, the understandably high cost of trans-Atlantic shipping and an earnest desire for a fresh start—has lit a fire under our bums and experience has been nothing short of catharsis.

Every manner of item unused, unwanted and unloved was tossed, given away, sold, donated. Old resumes, a prom dress, craft projects, broken toys. Books from old jobs, clothes that don’t fit or flatter, things with plugs that won’t work for us anymore, gone. Taking inspiration from the minimalist movement, I asked myself only two questions:

  • Do I love it? (save it)
  • Do I need it? (save it)

What I didn’t allow myself to ask were these questions:

  • Was it a gift?
  • Did I pay a lot of money for it?
  • Will someone think I’m silly for getting rid of this?

The questions make the decluttering easier and faster. They really do.  And the results are astounding. It’s easier to move around, to clean up, to see what’s beautiful. Why wasn’t it like this all along?

It’s not just among my physical possessions that I’m decluttering. Email newsletters, newspaper subscriptions, catalogs, memberships, they’re going too. Those gift cards I’ve been carrying around in my wallet—time to spend them down. It’s luscious.

The final frontier to declutter, and of course the most difficult one to tackle, is the clutter of the mind.  The sabotaging habits, the outdated tapes and scripts, the unwanted labels—I’d love to leave some of those behind as well. There’s no way to toss them into a recycling bin or trash bag. I’ve been struggling with this a bit.

While writing this, I started wondering what the equivalent “questions for mental decluttering” might look like. A neuron fired and I recalled the Byron Katie‘s powerful The 4 Questions and realized that they might just be what I need. Check them out if they resonate with you, but here’s a teaser:

  1. Is it true?
  2. Can you absolutely know that it’s true?
  3. How do you react, what happens, when you believe that thought?
  4. Who would you be without the thought?

I can feel the space opening. Who would I be without the thought? Who would I be without the thought that I am not enough? Who would I be without the thought that this is too hard? Who would I be without the thought that there isn’t enough time? Who would I be without the thought that it doesn’t matter?

Stay tuned.

Special needs eclipse

eclipseI had a special needs eclipse this morning. One of those moments when the challenges of raising a kiddo who needs a lot of help blocks out all of the light. The details aren’t important, but I can say that the morning involved toileting accidents, cold tea, lots of grabbing (on his part) and redirection that escalated into yelling (on my part).

I can’t even capture the intensity of the dark feeling now, but it was there, even though the circumstances seem trivial now. In one flash I saw myself forty years from now tying his shoe laces, wiping his mouth and his bottom, and my mind did a high-speed rewind through all of the thousands of tying and wiping moments I’d have between then and now. Zero to despair and rage in sixty seconds. It was hot and black and tight.

In those moments, there is a resentment, if I’m honest, both toward my son and toward the Universe. I cannot recall the last time I finished a breakfast without getting up. That’s where the heat comes from. The tightness comes from the seeming eternity of it. I have done this for so much longer than I thought I’d have to, and it’s not ending any time soon. Somewhere, someone is leisurely drinking tea and reading the paper, and it ain’t me. And it won’t be any time soon. A searing current of jealousy is there. I’m back at the very “why me?” beginning. It’s not pretty.

Something shifts ever-so-slightly and a friend pops into my mind. She has a child with special needs too, and it strikes me that she is probably having, or has had, or will have a very similar morning to mine. Then another friend. The another. A comment on this blog comes to mind; a mom who pointed out that it used to feel like we were having “one of those days,” but with time, you realize it’s just “one of those moments.”

At that moment, the eclipse passes. My beautiful boy is sitting in front of me again, and I am tying his shoes. He pulls to get up before I’m finished, but things feet looser. I don’t need to push against it, to control it or for it to end. It just is.

More breakfast table talk

About a year ago I wrote about a brutally and beautifully honest conversation that I had with my daughter about her brother’s developmental disability. A wise friend commented that our conversation would be one of many “periodic check-ins.” She was right.

Not surprisingly, the last few weeks have created a need for more conversation.

A couple of months ago we started toilet training our son for the umpteenth time. It required intense amounts of attention, all landing during the winter holiday break, keeping us close to home and all eyes and hands on our boy (and his laundry). While he’s made great progress, apparently she’s “had enough of it,” according to the sign on inside of the bathroom door:

bathroom sign

In my defense, good ergonomics are a critical part of his success, and he’s in the bathroom every 30 minutes, so it’s less work to just leave the potty seat and footstool in place. But I get it. She puts up with a lot, and this was the last straw. Needless to say, we’re trying harder.

Then there was the breakfast table comment she made after all of the media attention that I have been getting these last couple weeks after the Huffington Post article about his complex needs. She had seen a copy of the care map on the laptop in the kitchen. “Mom, you know that web thingie that you made? Did you know that the G is for Gabe, and that he’s in the middle? Just sayin’.” Point taken.

It’s so much easier to deal with this now that we’re talking openly about it. I can imagine that not too long ago, sibling frustrations were never voiced and parental guilt just festered. Not too long ago, we didn’t acknowledge it either. But giving everyone’s experience some air and light is so much easier than denying it.

I’m so curious to hear what others are doing to support all their kids.

"Mommy, me and Daddy" according to my daughter  (age 3?)
“Mommy, me and Daddy” according to my daughter (age 3?)

Care mapping conversation deepens on Huff Post Live

The HuffPo article by Lisa Belkin, “Gabe’s Care Map,” generated a lot of conversation and interest in creating data-rich, holistic snapshots of just what it takes to raise our kids. I’ve heard from lots of parents who are already making their own. It’s so exciting!

Lisa and I continued the conversation on Friday on a segment on HuffPost Live. Joined by fabulous special needs mom and advocate Katherine Kowalski and Dr. Richard Antonelli of Boston Children’s Hospital, we talked about how care maps can be helpful not only for depicting the complexity of our care teams, but how care mapping can help make it easier for families and professionals to partner on care coordination.

More to come. Just wanted to get this link up for anyone who’s interested. Time to get back to playing!