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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Passages

I opened a book last week and a bookmark slipped out onto the floor. It was a freebie from a favorite bookstore from my old life, back when I lived on the other side of the ocean. I loved that bookstore, with its coffee counter and author events and the way it always had exactly the book I needed even when it didn’t have the book I wanted.

The bookmark skidded across the floor, a little wave hello from another time, another me, a reminder that of the actual physical things that I packed and carried with me from that life, fewer and fewer remain. Clothes have become too small, plates have broken, toys have become boring. The things have stopped fulfilling their purpose and have given way to new things. There’s nothing to do but let them go. A spot somewhere between my heart and my throat clenched in missing and longing.

Recently I realized I’ve spent nearly every weekend for the past five years frustrated that I can’t seem to get myself and the kids out of the house like we did when we lived in Boston. Back then, being home on the weekends was a real struggle; our son’s disabilities made it hard for him to sit with anything for more than a couple of minutes, cycling through toys and activities at a pace that I couldn’t keep up with. My own inability to sit with that fact had me crawling the walls. Weekends became about getting up and getting out. Picnics, walks, bike rides, car rides to ice cream stands miles away, zoos…we were great at getting out.

These days, we don’t get out like we did then. Our house and life work differently and being at home works more often. But somewhere along the way I forgot that we went out because we had to, and when we didn’t anymore I started blaming myself that I wasn’t doing a good job parenting.

Like stuff, activities, habits, rituals and routines stop being useful. I forget that sometimes and cling to doing things the way I used to do them or having the things I used to have. It’s gotten me thinking about how what other worn out expectations and habits I’m holding onto, how much energy I’m pouring in to maintaining our old way of life and blaming myself when I don’t. Some things are worth the effort, but some things are no longer fit for purpose. I’m going to think about that for a while, and am curious to hear what you cling to or have let go of, too.

 

 

The new year as a threshold

Every moment offers a new beginning, but there is something special about the collective transition from one calendar year to the next.

It is and always has been a struggle for me not to get too caught up in new beginnings like this, to not be spellbound in the illusion that simply resolving to change will bring change, or that most of the mundane changes I desire, will bring lasting happiness.

And yet. A new beginning like a new year, if I use it skillfully—it can be an opportunity. It is a threshold at which I can pause and listen, receive instruction and energy, and set an intention. I can investigate and appreciate what has led me to this moment, and decide what can be let go of.

Last year I participated in a program that did in fact harness the energy that exists for me in the beginning and the ending of a calendar year, called One Little Word. Created by Ali Edwards, it involves choosing a word to focus on for the year, and as she says, “to live with, investigate, to write about, to craft with, and to reflect upon.”

My word for 2017 was Soul, and using monthly creative prompts from Ali I played with the word in all sorts of ways—set intentions, created a vision board, put together a play list, and a bunch of other fun things.

I’ll be doing it again this year, and my word will be Listen. As in listening to my inner voice, to others, and ultimately, listening to what can be be called my higher power, God or the Universe. But really, there were hundreds of words that are worthy of choosing—the gift is picking one and sticking with it while it works its magic.

One Little Word allowed me to shift away from seeing the new year as a pristine piece of white paper which I should resolve not to ruin, to instead seeing it as the space in which I can play and explore with intention, curiosity and imperfection.

If that appeals to you in any way, check out the One Little Word program for 2018. It would be fun to connect around it.

And just to clarify, I’m not an affiliate and don’t receive any money from Ali. As part of the class you can purchase some cool scrapbook/kit-making merchandise, but I used a sketchbook and my own crafty supplies.

 

Getting off on the wrong foot

Skärmavbild 2017-04-03 kl. 19.29.30.png“Louis, this feels like the beginning of a beautiful friendship” says Humphry Bogart as Rick Blaine in Casablanca. I don’t recall what Louis had said or done to prompt Bogie’s remark, but it certainly wasn’t whatever happened to me today when my son’s new doctor’s office called.

Walking to the bus on my way home from work, my phone rang. Blocked caller ID, which for me means only one thing—health care. I answered despite walking on a dusty, busy highway with a nearly dead cell phone. “Hello, this is the XX office at YY hospital. Your son had an appointment today at 1pm. I’m calling to find out what happened.”

My mind started racing through the pile of mail on the kitchen counter. No, I would have remembered if we had been “summoned,” as I like to call it; in our new country, the overwhelming majority of health care follow-up and specialty appointments are scheduled by health care letter that lands without warning, sometimes with as few as three days notice of the appointment but usually about two weeks. The assumption must be that people are happy to take off work to go to these appointments, because the process of rescheduling them usually involves finding one’s way to a phone during a very limited “phone time” window, nearly always during business hours. Busy signals, call back queues–and most perplexingly, sometimes the only option is to cancel the appointment and then wait for another summons, hoping that the next appointed time spat out by the scheduling roulette is better. If not, see step 1.

But back to the dusty highway. Later searching of the kitchen counter pile confirmed that I had in fact never received notice in the mail, and I confidently said so. “So you’re saying you never got our letter? It was mailed out on March 14,” the nurse said curtly. Clearly, she didn’t believe me. “Well, I guess we’ll have to reschedule it,” she said. “I guess so,” I said, equally incredulously. What exactly was she hoping I would say? “No, let me fly counter-clockwise around the globe and reverse time?” She said she’d send a new time by mail, and I managed to get her to schedule the appointment right then, to avoid having to move heaven and earth at work at a later date. She curtly said she’d still send me the mail, and follow up with a text reminder. “Fine, do whatever you want.” I’m sure she could hear my eyes roll.

I’d hazard a guess that hundreds of thousands of health care visits were missed around the globe today because patients didn’t know they had one, didn’t understand why they needed to be there, or found the rescheduling process impossible. Or maybe because they hadn’t even had a chance to open the mail. Hundreds of thousands of hours of wasted clinic time. Irritation and suspicion all around, at the tender point in the relationship when we should be building trust and confidence. 

Patronizing finger-wagging and mistrust on her end.  Irritated petulance on mine. Is this the best way to start a beautiful friendship? I don’t think so. I wonder what Bogie would say to that.

 

 

 

Parenting in a hospital, then and now

Despite the fact that my son is considered a “sick kid”—a child with multiple, chronic conditions—he actually hasn’t been in the hospital for years. About a month ago, his winter cold turned into pneumonia, and we’ve been reacquainted with hospital life with a vengeance. Parenting a child in the hospital for the first time in nearly a decade, I can’t help but notice how I’ve changed.

The changes in me reflect what I’ve learned from being active in health care advocacy and improvement and may predict the kinds of patients and families the health care system needs to be prepared to work with. Here are some of the differences between then and now:

I write things down. I have a notebook on the table next to me where I jot down when medications or treatments are given, when tests are taken and questions I want to remember to ask. I’ve also brought in a white board that hangs in plain site for everyone, and it’s there my husband and I post the questions we want staff to answer or where we list things we need. It’s interesting to watch how staff have started turning to the board during rounds or at shift change and pro-actively addressing things on it.

I look things up. In the past I relied on staffs’ explanations of what was happening. Now I look up terms, conditions and treatment that I don’t understand or just try to learn more when things don’t make sense to me. I also know more about how to tell the difference between trustworthy information and speculative advice.

I consult my on-line patient community. My son has a very rare genetic syndrome, and sometimes the care team has questions about whether the unusual presentation of some of his symptoms are related to this syndrome. Luckily, the family community we have on Facebook can be a resource—maybe not with the academic rigor that scientific articles offer, but it’s great to have a place to turn for info.

I ask better questions. In addition to writing my questions down so that I don’t forget them, I also ask questions to clarify and confirm what I just heard, or questions about what should happen next so I can prompt folks if it doesn’t (like what time the next pain med will be given). This is definitely a learned skill for me, and in health care it’s often taught to health care workers as a technique called Teachback. Providers as encouraged to prompt patients and families to summarize and repeat back what they just heard as a way to ensure that they’ve understood. No one is asking us to do this at the hospitals we’ve been in, but we find it helpful to do it anyway.

I am better at summarizing my concerns. I have learned that being able to succinctly communicate relevant history and concerns saves time and increases my credibility with staff, which in turn means that they listen when I talk. I wrote about the SBAR techniques years ago, and it’s especially useful when you’re in the hospital. When a group of doctors, residents, interns and specialists walk into the room, it helps to be able to get your concern across quickly.

I am better at communicating what’s important to my son and to our family. There is rarely only one treatment option in any given medical situation. When there is more than one choice about how to proceed, I want my son’s priorities to be taken into consideration. It’s up to me to let them know who he is as a person and what his priorities are. I don’t always know for sure, and I let them know that, too. If I can see that he’s anxious and they want to bring in five students to examine him, I’ve learned to say no. If he hasn’t slept well, I ask them to clean up the medical schedule to limit interruptions the following night.

I have better self-care coping skills that let me stay more present for what’s happening. When my son was younger, I didn’t understand that I needed to take care of myself in order to take care of him. It’s a challenge, but I try to prioritize getting sleep, eating as best as I can, and staying connected with people and ideas that keep me positive and strong. Given this past month’s political turmoil, that hasn’t been easy or even felt like the right thing to do at times.

I better understand and respect the roles of the professionals on my son’s team. I used to think that the doctor was the boss of the care team, and that everyone else was there to do the doctor’s bidding. Now I understand that each professional group has its own focus, modality and power. I try not to waste doctors’ time with nursing issues, and vice versa. I appreciate the creativity and problem solving of the physical therapists and the child-life specialists, and ask for their help. I value the work of the cleaning staff and the food services personnel, and I try to make sure they know it. I know that the radiologist won’t give me much info on what they see on the ultrasound unless I ask in a very particular way. Knowing who does what saves time and prevents frustration.

I consider myself part of my son’s health care team. In the past, I used to see myself as part of my son’s entourage, and the health care providers as his care team. Now I think differently. I know that whether or not the hospital staff see me as such, I am part of his care team. I know his medical history and priorities better than anyone. I often know the most about his genetic syndrome. I am sometimes the only person who can literally understand what he says. I know that my vigilance can prevent errors and increase his safety; people make mistakes and hospitals are not always healing places. I know that my involvement can reduce the length of his hospital stay. And if nothing else, I know that the hospital staff is too busy to get his food, bathe him, make him comfortable and keep him sane—and these are all critical to his health. So I am part of his team. Therefore, I expect to be part of treatment decisions. I expect to be able to sleep in his room and be with him around the clock. I expect to be told about his condition using actual medical terms, not just vague notions of him being “very sick.” I expect to be included in rounds. I expect to know what tests are being done, and I expect to see those test results as soon as possible. I expect to be able to have a say regarding who is on his care team. I expect to know what his providers are concerned about. In short, I expect to be treated as part of his team. (In fact, I consider him as part of the team, too, but that’s a topic for another day.)

I show the staff what my son is like when he’s healthy. My son was really sick for a while there, and was barely conscious at times. Combined with his developmental disability, his symptoms made it difficult for those who didn’t know him to see him for who he really was. We created a photo slide show on his iPad of pictures that showed him happy and healthy, and we had it playing during shift change and rounds. We hung his smiling school photo above the hand sanitizer. During this past month, one of his nurses watched the slide show and turned to us and said, “OK, that’s what we’re aiming for.” Seeing him healthy helps everyone interact with him in a way that encourages healing.

I still have so much to learn. I think health care does too. I’m not sure “the new me” has always been welcomed by staff during the past month. Hospital procedures are clearly the product of an earlier time, when patients and families were passive objects of health care, and providers were the only experts. Things have changed, and these changes are at times rather painful for all of us, patients and providers alike. Hopefully my experiences can give a small glimpse in how more active inclusion of parents when their child is hospitalized can show where we are headed, and why we might just want to get there faster.

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.

Mind the Gap

“What doesn’t kill you makes you stronger,” is a go-to saying in the special needs parenting community, something we say to each other at particularly difficult times when there’s nothing else to say, right up there with “Keep calm and eat this cupcake,” or “Can I refill that wine glass for you?”

At its essence, the phrase is true. In life we all need to make some effort if our muscles, mind, heart and soul are to grow. That’s what gyms, schools, and junior high dances are for. Waking up one morning and realizing that we have grown much stronger than our old self is a beautiful moment, one to be savored.

Unfortunately what the person saying the saying doesn’t always acknowledge is that sometimes, the “what” in the given situation actually can kill you. Or make you want to die. Or harmfully self-medicate. Or just simply disengage/avoid/deny, as was the case for me for several years. (Yes, years.) The effort required for the task is so great that we literally die trying, pass out from the effort, or don’t even bother starting. There’s a reason that there are training plans called “Couch to 5K” and not “Couch to Olympic marathon.”

Mind the gap

Which brings me to my theory about what I call the Gap. On one side is you — with your skills, your strengths, your resilience, your smarts, your capacity. On the other side is what life throws at you — work, relationship needs, illness, a bad economy, whatever. The distance (actual or perceived) between what you can do and what life needs you to do is the Gap. A little gap will make you stronger. A big gap will kill you.

When parenting a child with special needs, the gap can be bigger than expected: more to learn about your child’s illness or treatments, higher costs or lower income, less sleep or time for exercise, less support and connection with family and friends and more expertise needed to navigate a complicated system. Obviously, making the gap smaller is important for our survival and happiness.

If we want to narrow that gap, we can do so by changing: 1. what we are capable of or 2. what the environment requires of us. It’s a lot easier to change ourselves than to change everyone else, so most parents of kids with special needs start with this side of the equation with things like:

  • making getting more sleep a priority
  • exercising
  • eating more nourishing foods
  • meditating, journaling or another spiritual practice
  • becoming educated about their child’s illness or disability and treatment options
  • learning to navigate the system
  • investing time in organizing information or routines
  • connecting with other families with a similar illness or disability or navigate the same system
  • getting support from a counselor, social worker or therapist or taking time to do the “inner work” of special needs parenting
  • making time to have fun or be creative

If we’re fortunate, we have angels in our lives who bolster up that side of things too–taking care of our kids so we can make a call or go to an appointment, dropping off a meal when we’re in crisis, listening when we need an ear or helping us to remember to play.

Over time, we just might find that we do in fact feel stronger. That’s a wonderful feeling. When facing a new huge Gap in the future, there’s a certain confidence that we can close that one too. Often though, it occurs to us that we wish others didn’t have to face quite the extreme Gap that we did. So we start working it from the other end by helping to change the environment by doing things like:

  • raising awareness and creating forums to make it easier for others to find support and information
  • participating in research to improve knowledge and treatments
  • advocating for policy and legislation that make life easier, like improving health care access, more family-friendly work policies, legislation for issues that affect people with disabilities and their families
  • contributing time or money to organizations that help others to increase their skills and capacity
  • getting involved in systems change

What does your Gap look like? How have you become stronger? What are some ways you’re growing your capacity or lessening the burden of the environment to close the Gap?

Spending some time at the Threshold

When my husband and I moved our family from Boston to Stockholm last week, we decided to kick the whole she-bang up a notch by getting ourselves to Europe by boat on the Queen Mary 2. A week-long break between the stress of saying good-bye and hello appealed to us both. As the granddaughter of immigrants who had made their way to Ellis Island decades ago by sea, there was the romantic symmetry of returning to Europe on a boat for me as well.

oceanMostly though, I looked forward to experiencing the passage of seven days of trans-Atlantic travel, allowing my body to really feel the geographic scope of the experience, allowing it to catch up to the emotional and spiritual journey that my heart and head already knew I was making.

During the decluttering and packing frenzy leading up to “Crossing 2013,” a friend and family member pointed out that the boat ride was the missing element to make our move a true rite of passage.

According to the Encyclopedia Brittanica in the ship’s library (satellite wi-fi being thankfully out of our budget here on the North Atlantic) rites of passage are “ceremonial events, existing in all historically known societies, that mark the passage from one social or religious status to another.”

Weddings, funerals, coming of age ceremonies, graduations – all are rites of passage designed to provide a productive outlet for the stress caused by major life changes. EB went on to say that folklorists and anthropologists break down rites of passage into three phases:

  1. the preliminal or separation phase,
  2. the liminal or transition phase, and
  3. the postliminal or reincorporation phase.

In other words, during this event one is before the threshold, at the threshold, and past the threshold. Anyone who has been on an odyssey knows how significant a threshold is, an invitation and a call to change.  Once crossed, there’s no turning back.

Apparently, all that decluttering I was doing back in Boston was the preliminal phase. In this stage, anthropologists note that we cut ties, we give things away, we fast, we mutilate our bodies with a good tattoo, piercing or even a good head shaving, as Britney Spears and the Army know full well. Getting rid of about 90% of my worldly possessions seemed to do the trick just fine, inducing a mental state probably  similar to an intense fast or mind-altering substance.

Then comes the limbo, the phase I have been in for the last 2000 or so nautical miles, literally and figuratively. This is the solitary walk in the woods, the 40 days in the desert, the vision quest. It’s the confinement before the birth, the hours during which the bride must remain hidden from her soon-to-be groom. It’s invisibility, it’s in between, it’s the period when the caterpillar becomes cellular goop  inside the chrysalis before reorganizing itself into a butterfly. In my case, that means being in between continents, in between jobs, in between communities, in between daily grinds and languages. There is no way to find solid footing here, no Facebook updates, texts or tweets in which to create a narrative to this truly plotless period of floating.

So here I am, in the doorway at the threshold. By the time you read this I’ll have taken the leap into the reincorporation stage, becoming reimbodied in my new role as just-off-the-boat immigrant, ignorant outsider, new hire, new neighbor, novice, beginner, a veritable tabula rasa.

But until then, there are waves to look at and miles to cross. Time to reflect and take in the physical and metaphysical significance of my adventure, to be freaked out by it and then to toast it with a glass of champagne. To all my fellow and future sojourners, seekers and pilgrims at the threshold, I raise my glass—cheers!

 “Come, come, whoever you are, wanderers, worshipers, lovers of leaving, ours is no caravan of despair, come, yet again, come!”

— Rumi