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.

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Durga’s Tool # 637: Love, even when it’s hard

Another installation in my series of tools that helps me parent with compassion, courage and joy, inspired by the goddess Durga, who has always got my back.

Lisa Belkin at the Huffington Post did a wonderful story on me, my family and my Care Map on Friday. So many good things are coming out of it: new friends, new thought partners, new mentors, new opportunities. In some ways, the impact is easiest to capture in the stats: 9,000 visits to the blog, 4,000 Facebook likes, 1500 Facebook shares, 300 email shares. Impressive, unexpected, energizing. These numbers are connections, and it’s in our connection, in our community, that our message for inclusion and celebration of all people grows and thrives.

One unexpected consequence of the article was the public comments it would generate. Most of them were wonderfully supportive. Some were hurtful though, suggesting all sorts of things: that my son should never been born, that our society is harmed for having him among us, that we should stop investing anything in him, that I should stop whining. Even that my daughter’s name is dumb. I know, I know, the internet does strange things to people, making them feel invisible and invincible, free and even obligated to say whatever comes to mind. But ouch. It really hurt.

It hurt so much in fact that my first impulse was to label them as Jerks, to dismiss not just their opinions but their souls. To not only disregard them, but to wish them ill. Then it was to disengage–to stop reading the comments altogether (even the good ones, sadly) because I knew nothing good would come of it for me. Reading and responding would only perpetuate the toxicity of it all.

Author and visionary Oriah Mountain Dreamer once wrote: “Show me how you turn away from making another wrong without abandoning yourself when you are hurt and afraid of being unloved.”

Yes, show me how. How do I not abandon myself in this moment? Some guidance came this morning via illustrator Nathanael Lark‘s inspiring cartoon, How to Change the World.

How to change the world

It’s easy to consider another person a jerk when they hurt you. No one would blame you. And in this wonderful work of parenting a child with special needs, there are lots of opportunities to turn your hurt into hate. The problem is that it doesn’t change them, and it doesn’t change the world. The only way it changes you, if at all, is to make you smaller.

Thank you NLark for reminding me that even when I don’t love the messages, I can still love the messengers.

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?

I get by with a little help from my friends

Several years ago at the playground of our integrated preschool, a bunch of my mom friends were discussing the pros and cons of the kindergartens they had the option of sending their kids to the following year. Since my son had only one choice the following year, the self-contained classroom that I could either take or leave, I observed silently and jealously from the sidelines. When a good friend declared that all the trouble of touring and choosing an elementary school was “just the worst,” I vividly recall excusing myself to go help my son on the swings. Our friendship was never quite the same after that. I checked out. It just hurt too much to be so invisible.

As someone raising a child whose special needs impact his ability to sustain friendships with typical peers, I spend a lot of time thinking about his friendships and how to support them.

I spend less time thinking about supporting my own. I’ve come to rely on a trusted and loving circle of friends and extended family. I’m so grateful for them. John wrote it and Ringo sang it best: Oh, I get by with a little help from my friends.

When I reflect back on the past 10 years, I can see that not all friendships made it. That’s nothing particular to special needs parenting, or even parenting. Not all relationships last forever.

Some recent research shines a light on why several of my friendships couldn’t go the distance, and how I might have changed that. It also explains why some of my relationships have gotten stronger, and what might have made that possible, too.

Researchers at Brigham Young University recently released findings that for people raising young children with disabilities, certain types of social relationships are typically more harmful and others more helpful for parents.

Interviewing 40 parents of young children with disabilities, the researchers set out to answer the question of whether social relationships are always a help, or whether they might be a hindrance. Here’s what they found:

  • Relationships with spouses/partners and their other children were on the whole positive.
  • Relationships with friends, extended family and colleagues was more often characterized as negative.

There’s much to explore and discuss. But it was the factors that the researchers attributed this difference to that really caught my attention:

Since parents of CWD [children with disabilities] often receive training on accepting and working with the CWD, and siblings can receive similar trainings and support through schools or sibling networks, unrelated social networks may need sensitivity training to help families raising CWD feel accepted. Disability advocates have made broad based efforts to promote acceptance of differences (e.g., billboards, public service announcements, advertisements in magazines); however, individual level trainings may be warranted.

In the weeks that have passed since I first read this, I’ve mourned a little for the friendships that didn’t last mostly because our society doesn’t yet raise folks to be naturally accepting to disability.

I realized too that when it comes to all I know about inclusion and celebrating difference, I was not born this way. I had to learn. So did my husband and my daughter and my mother and my father. And if I wasn’t born knowing this, how can I expect that others would?

The researchers closed with this cautious recommendation:

Parents and family members of CWD may benefit from educational interventions regarding how to teach others in their social networks about disability issues.

OK, then. We need to be taught how to teach others about disability. Looking back on my friendships that have thrived over the past 10 years of raising my child, I can see what made a difference. Connecting with other special needs families is a natural step, as they too are being taught to accept my son when they learn to accept their own children’s differences. Writing this blog has given me the chance to share my experience with friends and extended family whose own knowledge and experience delights me. Modeling my own appreciation for my son’s differences with his peers (and my own) has also made a difference. Making the effort to include him in our community has also given folks a chance to learn something new.

What has worked for you? Which friendships have thrived and which have withered? What are some things you’ve done to strengthen friendships during early childhood? What techniques should we start to talk about as a community?

And while I’m at it, let me say to all my friends: Thank you. I’m so grateful that you’re in my life.

Plate techtonics

I’m on shaky ground this week, dizzy and disoriented. I can’t find a linear thread here so I toss out all these puzzle pieces hoping to make a coherent picture in the end.

Last week I jealously listened to a couple of parents on a panel share their memories of receiving their children’s diagnosis of a particular genetic syndrome before or at birth. Their stories triggered memories of my own years of confusion and worry when my child with medical, cognitive and developmental special needs had no diagnosis or prognosis, only assurances to wait and see. Nothing like their experience of having rock solid information, a roadmap, a sense of place even.

Chronic limbo left me unmoored during those years. I had two mental tapes, the public one which chanted “he’s fine, he’s doing great, wait and see, he’ll catch up” in unison with the therapists and teachers around me, and the private one, darkly creative, the one that read or heard about the worst cases of horrible care and outcomes for adults with disabilities and inserted my gentle, vulnerable son’s image into each one.

In the special needs parenting world, talk often turns to the need for acceptance. Accepting our children, accepting our challenges, accepting reality on a very basic level to simply exist helps us meet it with wisdom and discernment instead of running away from it in fear or kicking it away in anger. Without a clear sense of what was actually going on, acceptance was elusive for me. Acceptance and proper diagnosis, at least in my experience, were connected, and one couldn’t come without the other.

A few years ago my son was given a label, a diagnosis based on the appearance of his symptoms. The mothers on last week’s panel talked about how they both remembered the exact moment they receive their child’s diagnoses–where they were, what they smelled, what song was playing on the radio when the call came in or the information was revealed.  Our diagnosis was never like that. It just evolved over time based on new symptoms as they appeared, a name of a syndrome followed by a question mark which faded over time until it was nearly invisible.  It wasn’t a perfect match, but simply getting a label enabled me to get unstuck and move toward acceptance and advocacy. With the diagnosis came a whole new tribe of folks to talk to, new access to research, to resources. It felt good to stand on ground that wasn’t exactly solid, but swayed just gently and rhythmically enough to make it look like I was dancing.

A few moments spent on the website of a genetic syndrome support group this week brings me face-to-face with photos of a boy who could be my son’s identical twin. The same eyes, the same jaw, the same nose, even the same expression. Another click of the mouse and there’s another one. Brothers from another mother. With a deep sense of knowing, like cylinders in a lock clicking into place, I see my child in the list of symptoms where only a year ago I could see no strong resemblance. It’s hard to explain how. New symptoms have appeared, new behaviors have been identified. But this is not our genetic syndrome, not our diagnosis. A different one, a rarer one, with a whole new set of symptoms, a whole new tribe, a whole new language, a whole different place altogether.

And the ground begins to shake yet again.

Is shared parenting in a special needs family possible?

With the same jarring sense of realization that I’ve left a load of laundry rotting in the washing machine, this Sunday’s Boston Globe article Learning to Share reminded me of my intention, pledged back in the last millennium, to equally share the parenting load when I became a mother. What’s shared parenting? As the article so aptly puts it, “it’s the difference between being willing to drop off the enrollment form for summer camp and realizing, months ahead of time, that the right camp must be found; between picking up a box of Huggies on request and knowing when supplies are running low.” It may sound tricky (and according to the article, it is) and maybe it isn’t everyone’s dream, but when I read the article, I remembered that it had been mine.

In the idealistic-yet-oblivious flash of social justice insight that only 20-something’s get, it was obvious to me that if I wanted my future daughter to be able to balance a family and a career, I would have to do it first. And with almost eerie prescience, I sensed that simply learning to juggle more wasn’t going to cut it; equal opportunity would start in the home, and that meant shared parenting, not just being a mom who could bring home the bacon and fry it up in a pan.

Looking up from my coffee cup twenty years later, I realize things aren’t quite what I planned. Influenced by aptitude, interest or culture, when my husband and I divide household chores, we party like it’s 1959. Him: breadwinning, carpentry, car repair, pay the bills, IT service, comparison-shop for large household purchases, mow the lawn, kill vermin, assemble the tent, load the bike rack on the car. Me: cook, grocery shop, laundry, clean, de-clutter, mend (well, feel guilty about not mending), volunteer for PTA, buy teacher gifts, do all gardening except mow the lawn, schedule playdates, shop for back-to-school clothes.

Having a child with special needs seems to cement the roles even further. It’s fairly common to have a “case worker/bread winner” division of labor in special needs families, a la Kristina and Adam Braverman in Parenthood. (Love it or hate it, but that show and its companion blog nail my experience as special needs parent in so many ways.) In our family, I’m the one who schedules appointments with our son’s eight doctors and three therapists, chauffeurs to therapies, spearheads IEP meetings, special orders medication and medical supplies, badgers the insurance company, keeps track of the big picture in both kids’ development. Perhaps it’s possible to split this work down the middle, but I honestly can’t see how. In my son’s case there is simply so much information to keep track of and synthesize that my husband and I would spend as much time getting each other up-to-speed as doing the work itself. To make it possible for me to do this, my husband gets to take on the high-stress role of sole breadwinner while keeping up with one heck of a honey-do list. (Is it my fault that he’s the only one who knows how to solder?) We both work incredibly hard, but we are definitely not sharing parenting. I don’t even think this is strictly a gender thing; I’d wager money that same-sex special needs parent couples find themselves in the same bind.

Reading that article, I felt a little disappointed in myself. Somewhere deep inside I’m still that idealistic young woman who hoped to change the system instead of punting the problem forward to the next generation. Caught in a daily grind of unloading the dishwasher and reading neuropsychological evaluations, it became so easy to lose sight of that.

Without creating unnecessary pressure to hold myself to ever increasingly impossible standards, I want to continue to think about this. I would love to hear from other families (especially one who understand the challenges that special needs add to the mix) on how they share parenting. I need some good role models and some inspiration. And maybe simply some hope. Am I the only person thinking about this?