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.

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Durga’s Tool #2.1: Empty space

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stay tuned.

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.

Leaving the safe harbor

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” -Mark Twain

It’s time for an adventure. Maybe not an Everest climb or paddle down the Amazon, but for someone like me whose idea of a great Friday night is Indian takeout and a Midsomer Murder on the DVR, it’s kind of a big deal.

In a few weeks, my husband, the kids and I will be moving to Europe. Sweden to be precise. My husband was born and raised there. It’s where we met, a long, long time ago. It’s where we got married and started our life together. After 18 years of living in the US, we’ve decided it’s time for Sweden again.

I’ve made this trans-Atlantic move twice before. Before kids. Before a career. Before owning a home. Before turning 40. Before turning 30 even. It was an adventure those times, too. But this one seems so much more adventure-y, in that terrifying-and-ludicrous way adventures do.

There’s so much more to lose and miss. That’s a good sign; it means that I have much to be grateful for: a wide, rich network of extended family, a few deeply rooted friendships, a blessings of rewarding work and sheltering home, and schools in which my children grow and thrive.

“No, no! The adventures first, explanations take such a dreadful time.” -Lewis Carroll

It’s no surprise, given how much I am leaving behind, that people are curious about why we’re going. Frankly, I spent a lot of time being ambivalent about it myself, and that confusion likely telegraphs itself from my heart to the outside world.

I wasn’t even going to try to explain, assuming no one would understand since I didn’t. (And honestly, how do you tell your family that you’re moving to be closer to family? Try it.) But a family member encouraged me to make the effort. So here goes.

No single explanation will really suffice. Instead, there are many. We are leaving family and friends here, yes, to be close to family and friends who we have missed for a long time. There’s the opportunity for the kids to have a day-to-day life spent with cousins and aunts and uncles—and for me to see four of the world’s most perfect sisters- and brothers-in-law more than once a year. My heart smiles when I think of that.

Less certain but also appealing is the possibility that if we play our cards right, we have a chance for a somewhat less crazybusy life. Sweden’s work policies tend to be a bit more compatible with raising a family, and I do look forward to that. I say “less certain” because I’ve long suspected that crazybusy is my default setting. Here’s hoping for a re-boot!

The explanation I’m less comfortable giving to my friends who don’t have kids with special needs (but which my special needs friends seem to get before I get the whole sentence out of my mouth): I’m thinking about the future. It’s hard to explain. Whether it was a brilliant move or a foolish one…I’ll let you know in 20 or 30 years.

“A ship in harbor is safe, but that is not what ships are built for.” -John A. Shedd

A woman at a special needs conference two weeks ago overheard me telling a friend that we were moving to Europe. “OMG, you have a special needs kid and you’re moving to a different country?!?” The challenges of figuring out the ins-and-outs of new education, health care, and disability systems, finding new schools, new jobs, new doctors, new insurance, establishing all those new relationships with the school bus dispatcher and the pharmacy assistant, not to mention selling a home and packing—it’s exhausting and overwhelming to think about.

But I am grateful in knowing that I’m ready to try. Two years ago, it would have been out of the question. Today, I’m game for anything. I always dreamed I’d have adventures. Why shouldn’t we now? The wonderful thing about learning new skills like advocacy, collaboration and creative problem solving is that they are global. I’m bringing them with me. Thank you to all my wonderful teachers.

“Travel is not really about leaving our homes, but leaving our habits.” -Pico Iyer

We leave in one month. We’ve decided to take a boat. It’s the Queen Mary 2, and apparently you’re not allowed to call it a cruise, or some butler will come out and dump you in the ocean. It will be a wonderful chance to decompress between a busy period of leaving and a busy period of arriving. Or it will be a disaster, a family of four including one little boy who can’t sit still or drink tea without spilling among 1,700 very English English people. May God protect their shuffle board games. Either way, it’s a mode of transportation in keeping with our keen sense of adventure and desire for the romantic gesture.

In the mean time, there’s the leaving. The packing and the decluttering is so luscious that it deserves its own post. The tossing of the years of stuff. The unsubscribing from catalogs and email newsletters. The decluttering of the beliefs about who I am, what I am capable of, and what life will be life.

“Definition of ‘adventure’: extreme circumstances recalled in tranquility.” -Jules the Kiwi

More news to come on these extreme circumstances, or this adventure, for sure. Until then, it’s time to go pack a few more boxes.

Waiting for the New Health Care

This morning my son fell down the stairs, using his eye brow to cushion the blow. The same place where he’s landed twice before, with the scars to prove it. This time wasn’t so bad though, so after a cuddle on the sofa with a bag of frozen peas on his enormous goose egg, a Motrin and a kiss, I loaded him onto the bus.

Throughout the day I heard from his school nurse, who is a wonderfully caring man. He was extremely concerned, and as the day progressed his concern didn’t lessen. Finally he suggested that I pick my son up early and take him to the doctor. The swelling should have gone down by this point, he felt.

For a variety of reasons, I hesitated to say I’d be right there. It was my son’s bus driver’s last day of work. They are great buddies and I couldn’t imagine what it would be like for either of them to end their relationship without a chance to say good-bye. More importantly, while I’m concerned for my son’s health and safety, I’m also concerned about pulling him out of school unnecessarily. He misses lots of school for doctor’s appointments and evaluations. My mother-sensor told me he’d be OK.

I told the nurse I’d get back to him in a minute. I then called the triage nurse at his pedi’s office. She thought he sounded like he’d be just fine. The swelling would take a couple of days; no amount of ice would do it.

I then had the awkward job of calling the school nurse back. I could hear the disbelief in his voice when I told him that I’m not coming. I did my best to explain my reasoning, but I sense that he doesn’t agree with the pedi office nurse’s take on the situation. I’m stuck in the middle of the two of them like a child of divorced parents who aren’t on speaking terms, tossing out phrases like “subcutaneous tissue” and giving him advice on five-minute on/25-minute off icing strategies. It’s not particularly fun or useful for our relationship.

I had asked the school nurse to send me a picture of my son’s bump. At first he told me he couldn’t, but he must have worked hard to get the school to bend it’s policy of not using personal cell phones to take pictures of students (because of course there is no school phone to do this with). I asked the pedi office nurse if I could send the picture to her. She said I couldn’t because they had no secure way of receiving it. They have an electronic messaging portal, but you can’t send images to it, only text. What goes unsaid is that in our current health care payment system, there’s no way for my pediatrician’s office to bill for looking at email, either.

In my mind, I envision the future. Here’s what it looks like:

My son’s school nurse calls me with his concern. I securely video conference in the triage nurse at his pedi’s office, who can see his injury. I let them talk through the medical issues, being present to represent what I know about my son and what’s important to him–staying with his friends in school and saying good-bye to his bus driver. My doctor’s office can bill for this time. Within minutes we have a plan and we all agree about it. We go on with our day. 

Until then, we’ll hobble along with a broken system and without the right tools, missing school and work unnecessarily, losing money and time to learn, or feeling guilty and awkward because we can’t all get on the same page.

Integrated family-centered care can’t come soon enough in my book.

Bushwacking: Four stages of becoming a family leader

Tomorrow morning I’m going to lead a round table discussion for special needs parents on using advocacy skills for systems change, also known as family leadership. If you’ve known me for a while, you realize how ironic this is. A handful of years ago, I was anything but a leader. I was so reluctant to take on the role of special needs mom that I wasn’t even a follower. But now here I am. How did this happen?

Blazing a new trail

The first few years of parenting my child with complex special needs was like stumbling along an unmarked trail in the woods. I went in circles, covered in scratches, stumbling into poison ivy.

Then after a while I crossed paths with some more experienced hikers and started figuring stuff out—which mushrooms are edible, how to navigate using moss growing on the north side of trees. I had to let others know these gems! And so I stopped, turned toward the direction I just came from, reach out a hand to help those behind me could catch up.

Until finally, I knew the woods well enough to see that the trail was never going to take my family where we wanted to go. Even if it was marked, even if it was cleared. So I started blazing a new one.

A path toward leadership

While most people think that leaders are born to lead, that’s not always true. More often, they’re grown. This growth pattern is an expansion: an addition of skills, experience and expertise that allows us to help ourselves and eventually help others. Fellow special needs parent Eileen Forlenza calls it a progression to leadership. I’m not so sure it always moves forward; a new situation arises—a new symptom, a transition—and we feel like beginners again. But even so, if we step back far enough and squint, this pattern of growth toward leadership can be discerned.

Stage 1: Becoming ready to advocate

In all of the stages of family leadership that I’ve read about I’ve never seen this one included, yet it’s the most important. For many people, including me, it can be difficult to get in the driver’s seat. It doesn’t mean that we are neglecting our children; when I was in this phase, I was probably at my busiest and most stressed. I just couldn’t allow myself to get immersed enough to get to the heart of what my child really needed. It took several years of learning stress management and coping skills to have the courage to move into advocacy meaningfully. (At the same time, I often find myself back here as if I’m learning this for the first time.) Some activities of this stage:

  • Becoming accustomed to unexpected demands
  • Letting go of our expectations
  • Working through issues that prevent acceptance
  • Some useful skills: self-care, stress management, self-reflection
  • Taking care of other acute situations, i.e. financial, legal, emotional

Stage 2: Advocating for your family

In this phase, we learn to advocate for our own families. Some things we focus on:

  • Understanding the diagnosis, the symptoms and the treatments
  • Knowing our rights
  • Learning about resources & info via listservs, magazines, e-newsletters, trainings
  • Navigating the system and coordinating all aspects of care
  • Some useful skills: research, listening, organize information, cooperation, understand medical, educational and legal concepts

Stage 3: Advocating for our community

At a certain point, we learn enough about how to get our own child’s needs met but become sad or angry thinking about how many other families are still struggling. In an effort to pay it forward, we often engage in activities that aim at making it easier for others to make progress. And so we spend time:

  • Giving feedback: participating in surveys, focus groups, advisory councils, calls and emails
  • Sharing resources & information with other families via listservs, magazines, e-newsletters, trainings
  • Helping others navigate the system
  • Some useful skills: writing and public speaking, telling your story, supporting and coaching others

Stage 4: Advocating for system change

With more knowledge and experience comes the realization that the existing medical, educational, legal and society systems are simply not adequate to meet the needs of all people (especially our special kids), and yet they should be. At this point, we want to not only help other families make progress, but change the nature of the system itself. We start focusing on:

  • Lobbying politicians and representatives for change
  • Participating in the design, implementation and evaluation of system change
  • Mentoring others for leadership: A great leader doesn’t create followers; they create other leaders
  • Making the system easier to navigate
  • Some useful skills: lobbying, understanding systems, developing programs, mentorship, collaboration

Becoming a leader can feel intimidating. It requires new skills and courage at every step. It can be helpful to notice that leaders aren’t “born with it,” but are called to it. We can learn these skills. If we’re lucky, we have support and friendships for companionship along the way.

Some parting questions: Where are you on your path toward leadership? Notice how you can be at many places at once. When do you feel most like a leader? What made you ready to advocate? Who are the mentors who encourage you to lead? What skills do you want to learn so that you can be more comfortable leading? How can we support each other?

Never doubt that a thoughtful, concerned group of citizens can change the world; indeed, it’s the only thing that ever has.
Margaret Mead

Open Arms

I’ve had another one of those experiences that are so complicated that it’s not easily digesting itself into a post. But it was too good not to share:

There are a lot of spectrums in the special needs world. One of them is the spectrum of embracing folks with disabilities in one’s everyday community. The spectrum looks a little like this, from one end to the other:

  • Rejection: “You’re more than welcome to join us if you meet the following requirement: you are exactly like us.”
  • Tolerance: “We’ll put up with you because you could sue us if we don’t.”
  • Acceptance: “Since you asked, sure, you can join our game.”
  • Embracing: “Great! You saw our invitation. We’re glad you came. Tell us what you need to make this work.”

…and many nuances in between.

I don’t expect folks to embrace my child with a disability all the time. I don’t think mainstream folks have had enough chance to rub elbows with folks with disabilities yet to have the necessary appreciation for difference that’s required for get how wonderful it is.

Acceptance would be nice, but the problem is that after experiencing mostly rejection and tolerance (usually stemming from ignorance and inexperience rather than malice), I’ve gotten tired of the necessary wheedling and cajoling required to gain admission. But then, if folks with disabilities stay home, others don’t get experience with them, and the cycle of ignorance and rejection continues…

Thus it was that I found myself completely paralyzed to try to enroll my son in an informal, impromptu, neighborhood soccer “clinic” last weekend. After last winter’s adaptive soccer debacle in which two dozen kids were sent out of the gym so my son could play soccer with a dozen middle-aged men with disabilities, I had set my sites on a more inclusive rather than separate setting. But my fear of not being accepted was pretty huge.

As the start day approached, I couldn’t bring myself to register officially; I imagined scenarios in which we were turned away, one more vivid than the next. In the end I forced my husband to come with us for the first class, to register on the spot; if we were going to be rejected, we’d all be rejected together. I don’t know how I had become so sensitive, but there it was.

So imagine my surprise: we show up on the field and walk up to the coach in my most submissive, hat-in-hand approach. I begin to launch into my “I was just wondering if it would be ok if…” speech when the coach smiles, grabs my son’s hand, and says with total friendliness, “Sure, no problem. Of course he can join us. See you at 4.”

It turns out that his daughter has special needs too, and she was in my son’s class when he still attending public school in our town. I guess success must breed success, as the old adage says, or I wanted to test my luck, because I took this as a sign to make a bold move.

For months I’d been dreaming about getting my son into the after-school program at my daughter’s school a couple of days a week. It would be a great socialization experience for him. (Why is it that special needs kids “have socialization experiences” but other kids “make friends”? A post for another day.)

Every time I thought about the idea, I imagined a reason it wouldn’t work. Legal reasons mostly, but really it was fear of rejection, plain and simple. Bringing it up with other advocates, friends and colleagues, they shot the reasons down, one by one. The clincher came when my two co-workers lovingly baited me: What have you got to lose? Stop being so afraid.

I left the office and headed to my daughter’s school. I mustered up the courage to swing by the after-school office and talk to the young man who administers the program at our site. I coolly mentioned that I’d be submitting an application for my son to join after-school a couple of afternoons a week next fall. I was about to launch into a speech assuring him that my son’s PCA would be on hand, he interrupted me.  His eyes lit up. “I often wondered when your son would join us. I was even thinking about how we could get it to work. When you submit the paperwork to the main office, please tell them that I’m totally on board. This is important for our program. I want ours to be the kind of place that every kid can attend.”

To those out there who have experienced rejection, grit your teeth through tolerance, wheedled and cajoled, carried the burden of making things work, I say: thank you. Because you were there, I am here. And I’m really, really grateful.