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.

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. 

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.

Recombobulating

Last spring I shared details about the epic adventure my family and I were making as we moved ourselves and our 61 boxes of prized possessions across the Atlantic Ocean to Sweden.

At the time, I noted how the journey was feeling like a real adventure, a rite of passage, with all the classic phases of disintegrating into some sort of gooey mess, crossing a threshold, and then becoming recombobulated in some new (if not improved) format on the other side. I was pretty impressed with myself.

Well, it turns out that I did not nail the landing as crisply as I thought. recombobulation areaApparently, moving yourself and your family to another country, finding jobs, navigating a new healthcare and school system, finding a place to live, moving again, figuring out where to get your hair cut, how to pay bills on-line, and finding a new groove takes time. There is no rushing it. There are no shortcuts. You just have to get through the day over and over again until it becomes less new feeling, like wearing in a pair of shoes.

It has been a summer and fall of unsettling change. Of being disembodied, despite my hopes for a swift entry into everyday Swedish life. You would think that that would have provided excellent blogging fodder. Au contraire, mon frère. Despite my secret dream to be able to produce a steady, pithy and hilarious commentary about our new life à la David Sedaris in France, I got nothing.

Writing a good blog post for me has always been a formula that looked something like this:

 interesting situation + new or clearer insight = new point of view

These last few months have been so topsy-turvy that while there have been plenty of interesting situations, the pace at which they’re happening is so fast that the insights either don’t stick or just slip through my fingers. As a result, the writing just hasn’t been there. And the living thing is just so time consuming. When would I have time to write, between figuring out how to re-load my public transportation pass and how to recycle used lightbulbs in a new land?

The trick with living with this rate of change has been to be patient and to let go, something I’m not always good at. Considering how much change parenthood has put me through, I should be an expert by now. But I’m not.

This evening when I head home to my new house, I will hopefully not accidentally walk past it. When I go to cook dinner, I will hopefully only need to open three drawers or less to find the spatula. And please, someone, let there be enough toilet paper. Maybe I’m asking for too much. Patience.

Greetings from the other side

“I sing the body electric, I celebrate the me yet to come, a toast to my own reunion…”                      –Michael Gore and Dean Pitchford

Oh, to be a stranger in a strange land. My family and I sold our house, said good-bye to our jobs, our friends and family, and about 90% of our stuff and crossed the Atlantic by ship in a sort of 21st century reverse emigration from the US to Stockholm, Sweden, where my husband is from. We landed a little more than a week ago.

In earlier posts I shared how this experience has been both an adventure and a rite of passage, divided by the anthropologists into three distinct phases—a preliminal phase of ending some aspects of my old identity, a liminal phase spent in a metamorphic trans-continental boat ride, and now, this final post-liminal phase of coming out the other side a new and different person.

And new and different it has been.

We arrived in Sweden to festive pomp and circumstance after disembarking our ship in England and hopping a short flight to Stockholm. Flags, streamers, champagne, hugs, dinner in the garden, even the cherry tree blooming on cue for our arrival…it was a reception in the truest sense of the word.

Reality hit the next morning like a hammer. I was startled awake in a disorienting free fall while my mind attempted to locate my body in its mental GPS. Yes, dear, down there in that long skinny country on the top of Europe, that’s where you are. Thud.

The disorientation lingered like a hangover. Insert confused woman montage sequence here: confused woman working the coffee maker (weak coffee being grounds for deportation in my new homeland), confused woman figuring out the dishwasher, the washing machine, the shower. Each moment left me stymied.

The pinnacle of ridiculousness–at one point I stood for several minutes, swearing under my breath, trying to open the front door by turning the deadbolt lock to a variety of positions. Finally I realized that unlike my American front door, which opens in, Swedish front doors open out. Duh.

Given that I spend several weeks here each summer and even lived here many years ago, I’m surprised to be this disoriented. I see now that on those vacations I somehow skirted around many of these domestic chores. Determined to be a thoughtful house guest, last weekend I pragmatically attacked each task head on.

The remainder of the week continued to offer a real sense of seeing life with fresh eyes and beginner’s mind–not necessarily bad, just curiously different. Can I take my daughter from the schoolyard at the end of the day or do I need to tell someone? What do I need to ride the bus? What radio station should I listen to? What brand of hot dogs should I buy? (And these are just the little things.)

The confusion fog will certainly hang around while I continue to find some sense of self, or as the rite of passage model suggests, a new embodiment. There is a definite feeling of rematerialization as I go about my new life, like vapor turning into liquid, liquid turning into solid. With each day, I feel a little less like a cloud with feet.

This afternoon someone asked how I was doing. They asked if I was overwhelmed, using a phrase in Swedish which uncannily translates into “being in a state of disintegration.” I smiled and was able to reply honestly. “No, quite the opposite.”

Durga’s Tool #421: Prostration

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.

Several years ago I heard a radio interview with a devout Jewish woman who had a practice of laying prostrate—face down on the ground, arms outstretched. She said she did it to remind herself that she was not in control of every little thing. She was in God’s hands.

In other faiths too, the act of laying oneself down is one of humility or surrender. While I might not share the beliefs from which this tradition springs, I do appreciate the value of acknowledging that I am not always in control.

In the Western world, we like to be in control. Just take the temperature of the air around us for example. Few people can bear the sensation of being too hot or too cold without commenting on it. We have heat and air conditioning so that things can be “Goldilocks just right” at every moment. Tell us we can’t change the thermostat at work or in our hotel room and you’re likely to have a revolt on your hands.

This past week has been a test of my willingness to admit I cannot control everything. At the same time that I was blogging about the excitement of our upcoming adventure, things were unraveling behind the scenes: the very specialized school which we deem absolutely necessary for our son’s development contacted us to let us know that there will probably not be a space for him when we arrive. Maybe not in the fall either. The gatekeeper even suggested that we keep him home until school starts in the fall.

I flew into a panic. How could this be happening? How could they do this? Didn’t they tell us everything was all set? Didn’t they know that I had just sold my house, that I quit my job, that our very future was in their hands? Did they know how much he would regress? It was so painful that I couldn’t even let my mind think about it.

That’s when I remembered the woman who lays in prostration, and I mentally allowed myself to lay down beside her.

I cannot control everything. I cannot change the order of the waiting list. (Maybe in other countries you can, but not here, and I’m grateful for that.) I cannot make different words come out of the mouth of the gatekeeper. I just cannot. And if I cannot accept that, the next few months and years, indeed the rest of my life is going to be filled with suffering.

Interestingly—and perhaps here’s the point—when I let myself do that, my body and my emotions could relax enough to let my brain turn itself back on. It could mobilize. I was able to come up with a few unconventional alternatives and email them to the gatekeeper. Suddenly my “things will work out” mantra didn’t seem so desperate and hollow.

This morning I heard back. There is a school in another town with the program that we need. They have a space. He can start right away. I am breathing deeply again.

Prostration. With this one posture, one throws oneself at the feet of God or the Universe or circumstance or life itself and hopes that in the acquiescing, the surrender, there may be mercy. This time, there was. Will there always be? Hard to tell. Maybe not mercy, but maybe less terror and more creative problem solving.

And that is something I have faith in.

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.

Stages of grief and special needs parenting: Is acceptance all there is?

The stages of grief—the emotional progression following a loss made famous by Elizabeth Kubler-Ross—has often been applied to experience of special needs parenting. To those of you who aren’t raising kids with special needs this might seem really weird or just plain morose, ungrateful or unkind. I mean, nobody actually died, right? But although none of us gets to live out the fantasy life we dreamt up before the kids arrived, sometimes the gap between the life you expected and the life you’re living is so wide that you do feel a sense of grief. Maybe grief for the imaginary child you naively conjured up. Maybe grief for the confident, easy-going parent you thought you’d be.  Maybe grief for an easy-breezy life that you imagined would be yours. Maybe all of the above.

In some ways, the metaphor has been my salvation, providing a roadmap for an otherwise emotionally disorienting parenting experience. In her article “The Natural Emotional Cycle for Parents of Children with Learning Disabilities,” Dr. Jodie Thorz Dawson’s swiftly summarizes Kubler-Ross’s well-known model and draws parallels to parenting a child with special needs. Parallels to my own parenting experience spring to mind with little effort. I won’t re-hash them here because they’ve been so often explored, but just as a refresher, the stages of grief (and my own shorthand memories) are:

  1. Denial. “He’ll outgrow it. Everything will be fine.”
  2. Anger. “If the teachers/doctors/insurance company/society would just do what I tell them to, everything would be fine.”
  3. Acceptance concept.Bargaining. “If I quit my job/sell my business/dedicate my life to getting that out-of-district placement/cure/experimental therapy, everything will be fine.”
  4. Depression. “No matter what I do, nothing will ever be fine. Ever.”
  5. Acceptance. “It is what it is. Sometimes it’s actually fine.”

The stages of grief have been a helpful framework for me. It was always comforting to feel that I was going through a universal experience, and if I applied myself, I’d come out a healed, accepting person. Certain moments and milestones do feel particularly heavy with grief, something I wrote about in a post a while back.

Lately though, the stages of grief model feels like it ends one stage too soon. Maybe I’m misunderstanding what’s meant by “acceptance,” but the word itself feels too neutral, too flat, too stoic, too stiff-upper-lip to describe the joy and richness I’m experiencing with my son, my life and myself. Because of him and the experience of parenting him, I’m feeling things, meeting people, walking through open doors that would never have been available for me without him. That’s not accepting—that’s growth. Expansion. Celebration even.

I’m not sure what I’d call this next stage. Any ideas? Has the stages of grief framework been helpful for you, and do you think it needs some more stages?