Engagement and Groundhog’s Day

It’s not Groundhog’s Day here in Sweden but that won’t stop our family from the annual viewing of the Bill Murray classic. Tonight we’ll snuggle on the sofa while Bill awakens to Sonny and Cher for about, according to the DVD comments, 1000 years or so, reliving the same day until he gets it right.

When I first saw the movie years ago, it was merely a funny, clever film with wry Murray wit and all that Andy MacDowell hair. Over the years it has become a story of engagement.

For what is engagement if not a waking up to the realization that life could easily be an endless string of days filled with despair and confusion? That we can make a difference for ourselves and those around us simply by paying attention to what the world needs and then doing those things? That when we do that, we are free?

Am I right or am I right or am I right…or am I right?

Happy Groundhog’s Day, y’all, no matter what shadows, seen or unseen, are out there.

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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.

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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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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?

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Care mapping as reflection and celebration

Since all the publicity around Gabe’s Care Map in Lisa Belkin’s Huffington Post article in January, I’ve heard from many familes who created their own Care Map. Today’s post comes from Elizabeth Cummings of Montana, mom to Charlie and Max, about how she created her own and what it meant to her. I love how she used the process to support her sense of capacity and celebration, or as I’ve often expressed it, going from “Why me?” to “Lucky me!” My grateful thanks to Elizabeth for being willing to share her reflections! 

As a parent of a child with autism, it can feel as though I’m always in a hurry. Between juggling therapy sessions, medical appointments, school carpool, and trying to find those few precious moments to myself, sometimes there simply aren’t enough hours in the day.  When it comes to managing my time online, I’m ruthlessly efficient, but when a family member posted Gabe’s “care map” to my Facebook page recently, I paused. The graphic drew me in because it so beautifully illustrated what I could rarely find enough words to express. I looked closer. And then I clicked “share.”

When I saw Cristin’s work, I felt exhilarated and validated. Without even knowing me, it was as though someone had drawn a picture of my life. To me, the model’s strength lies in its simplicity. Finally, a clear and effective way to communicate the working parts of a daily life very foreign to most outside the special needs community. I knew the care map concept was important, especially in helping practitioners understand the many aspects of care parents of children with autism find themselves managing. I also knew that I had to try making one myself.

At the center of our care map is my son, Charlie, a loving and intelligent six-year-old with ASD. He is surrounded by a large and caring family—his first level of support. From there branch the many specialists, educators, community members, and policy makers who contribute to his care and development. Charged with coordination is the parent of a diagnosed child—armed with little more than love, large three-ring binders, and a laptop—doing her (or his) best to navigate this complicated world of autism.

EC care map

Creating my map helped me reconsider my own role in my son’s care plan.  I have come to see myself as the central facilitator between many separate agencies. With this awareness, I’ve been able to better communicate with my son’s practitioners and more actively embrace the myriad tasks of care management.  The exercise allowed me to step back and view Charlie’s system of care with new perspective.  I found comfort in all these little circles, each representing a different system working to support my son and our family.

Elizabeth with her sons Max and Charlie

Elizabeth with her sons, Max and Charlie

When these support pieces are each in place, all adequately funded and working in partnership, then families become empowered and the image of autism can start to change.  The picture facing the millions of parents struggling with an ASD diagnosis in 2013 doesn’t have to be solely one of loss and heartache.  It can also be the look on my face when, at age 3, my son first recovered the word “mama” in therapy.  It can be the sound in his teacher’s voice when she excitedly tells me about a conversation he has had with a friend in kindergarten.  It is the new perspective these children impart, and the special joys and blessings they share with those who love them.

Thanks Elizabeth! If any other folks out there would like to share their care mapping story, let me know!

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Playing out on the street

The two little girls next door ran towards me as I watched my son ride by them on his truck out on the street last night. Nearly out of breath they asked, “What kind of sickness does he have?”

A searing red heat flared up in me. I never know exactly what to say in these situations, but I do know enough not to answer right away, to take at least one deep breath while the adrenalin rush subsides. When I get in full Mamma Bear mode I want to lash out at these girls who I had never even met, but from experience some voice in my brain reminded me that while tempting, shaming them would serve no purpose than to leave me feeling like a jerk later on.

After a moment, I said, “Well, he doesn’t have an illness, but he does have a syndrome.” (Not my best response, but they have been way, way worse, let me tell you.)

They asked what that meant. Shifting gears away from the genetics lecture, I told them that just because someone is different doesn’t mean that they’re sick. And besides, we’re all different in some way. “But we tried to talk to him. We asked him what was wrong with him…” (seriously, doesn’t anyone teach their kids manners anymore?) “and we could hardly understand what he said. He just talked about the bus coming.”

“Alright, buddy!” I thought to myself. You know you’re not a typical mom when you’re psyched that someone can understand your child, even if it’s his response to a conversation he had with someone else three minutes earlier. And then my heart broke realizing that he was really trying to have a conversation with them but that they couldn’t connect.

We hobbled along through the rest of the conversation, me pointing out that we just moved here from the US and that my son, like the rest of us, was still mixing Swedish and English words, tossing in that weak platitude about everyone being different once more like a Hail Mary pass, before the girls had had enough and returned to their part of the street.

The fire that flares up isn’t directed at these girls. Possibly a little bit at their parents, I’m ashamed to say. But mostly at the reality that my son is growing up different in a world for which differences of many kinds means “sickness.” Where different means “I don’t have to see you as a person.”

I’m not suggesting we shouldn’t notice difference, that we shouldn’t be curious about it, try to understand it, or even to appreciate it. That’s not diversity, that’s denial. But what if we could look at others and notice the similarities first? “Here is a person,” we would say. “She has loved like me, bled like me, struggled like me, laughed like me. And by the way, her hair is curlier than mine.”

The fire isn’t just an anger. It’s a sadness that my son is growing up in a world in which the main question it is asking him is “What is wrong with you?”

What will it take for this to change? How many years or even generations of retail, one-to-one conversations will we have to have? If last night is any indication, we will be waiting a long time. Is there any way to speed this along? Where do we find the energy and courage to keep at it, when it would be so easier to go inside and never come out to play again?

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Fun houses and bumper cars

My family took a break from the chaos of our trans-continental move adventure this past weekend and headed to an amusement park in our new home town of Stockholm. Right inside the gates, our niece, an experienced park visitor, insisted we try out the park’s fun house.

funhouseA classic vintage fun house, this one was delightfully creepy, in that old school clown-and-carny sort of way. It played tricks on my senses and despite the domestic setting—it was meant to be a house, after all—I was quickly disoriented by the awkward uneven staircases, distorting mirrors, wobbly floors, rooms pitched at unbelievable angles, optically confusing paint job, psychedelic sounds and what felt like miles of switch-back turning curves. The closest experience I have outside the amusement park is that strange feeling of walking up an escalator that isn’t moving—times 100.

My brain tried to find sensory equilibrium but simply couldn’t. By the end, I felt tipsy and  and dizzy, stumbling along to keep up with the kids until we were ejected from the building on a piece of carpet down a long slide. We giggled with relief as we tumbled into the day light.

For a brief moment in the house it struck me that being in the fun house was so like my experience of parenting a child with special needs, especially in a new country. Looking from the outside in, the recognizable elements are there: the kids, a school, a pediatrician, the toys, the hopes, the dreams. But take a step in and the floor starts to shake.

With my typically developing daughter, things are for the most part as they seem. She started school within 72 hours of our arrival, making friends easily and requiring surprisingly little support. (Her response to my query of how the first day of school was: “Fine.”)

But with my son, who has complex special needs, everyday activities often provide a distorted backdrop for a confusing and vertigo-inducing experience. Two weeks after we landed, he was still sitting at home, starting school at a snail’s pace after many bureaucratic obstacles had been overcome. We spent hours on the phone and in doctor’s appointments trying to get a simple medication refill, but were still empty-handed as we reached the end of the bottle.

As my daughter’s mom I usually feel pretty confident, but parenting my son I’m often confused, disoriented and running to stay upright, just like in the fun house.

The day went on passed and we hit the roller coaster, the carousel and old-time cars. Eventually we found the bumper cars, my son’s favorite. As we got our seat belts on, the tough-looking guy who runs the ride approached us and asked my son, “How many times do you want to ride?” Confused, I answered on his behalf what I believed would be my son’s truth. “As many times as we can.” The mom in me wondered why he was making small talk with us. Sensing my bewilderment, the man explained, “When kids with disabilities ride on my ride, I like to let them take a few extra turns. When the ride ends, don’t leave.” He looked at us both. “Have fun.” And that was that.

More pitching, turning, whiplash, smiles and nausea ensued. This amusement park life of mine definitely isn’t what it seems. That’s not always a bad thing.

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