Overtaken or working through?

Posted on February 22, 2012 by

Last week I wrote about how my professional and personal worlds are colliding now that I’ve started working for a project that advocates for kids (of all kinds, but especially with special needs) and their families in healthcare reform.

Sitting down to my journal this morning, I flipped back through the past few weeks and noticed that Disability — as both theoretical concept and a pragmatic reality — hasn’t just seeped into every corner of my life: it’s pushing out nearly everything else. It’s filling not just the huge blocks of time I think of as “work time” and “family time,” but even the small slivers of time in between, not just the thoughts but the space between the thoughts, permeating my consciousness from the moment I start journaling at 5am to the last few moments of each day I spend reading every night. (The book right now is required reading on the evolution of disability rights, I kid you not.) The many, many moments in between  —  checking email, talking to friends (often also parents of kids with special needs), planning for the future, running errands and making calls (picking up meds and scheduling specialist appointments) leave little time for other things.

The irony is not lost on me. In the process of trying to build a life unimpeded by the limits of disability, it looks as though it is taking over like a kudzu vine. In an effort to move beyond disability by becoming empowered by it, I have become ensnared.

It’s cause for concern. This level of immersion in the stories of others and their challenges leads to a sort of vicarious trauma that will surely lead to burnout. And surely no one feels like hanging around a walking protest sign. At moments I bore myself.

And yet… (yes, there’s always an “and yet….”) it strikes me that the seeming claustrophobia that Disability is playing in my life right now is in fact a cocoon; there’s no way for me to metamorphosize to the butterfly-hood that is a joyful, inclusive, authentic life without being held completely captive by this for a little while. In my struggle to break free, my wings grow stronger and eventually, when the threads of the chrysalis release me, I will be something completely different than I was before.

At least, that’s what I hope.

Posted in developmental disability, special needs, special needs parenting, civil rights, disability rights | Tagged , , | 2 Comments

Push it good

Posted on February 8, 2012 by

If you’re interested in media portrayals of disability, here’s a new one to add to the DVR list: Push Girls, a new reality show about four gorgeous, celebrity women who all use wheelchairs. Seems hot and sexy and real, which could be good. Or maybe hot and sexy and exploitative? We won’t know until we see it.

Posted in disability, disability rights, inclusion | Tagged , , | Leave a comment

The Personal is Political is Professional

Posted on February 7, 2012 by

Many years ago I came across a refrigerator magnet in a quirky gift shop that I have often recalled since. On it, a line-drawn skeleton lies in repose in an open coffin; a thought bubble rising from his skull asks: “I wonder what I’m going to be when I grow up?”

To say I’m a jack-of-all-trades is an understatement. I’ve been a business consultant and a professional weaver. I’ve sold cheese and paté in a European capital. I’ve been a project manager at a translation company and I’ve sold art and antiques on the nation’s largest public television auction. I was the office manager at a textile conservation center that worked on Jackie Kennedy’s wedding dress and Babe Ruth’s baseball jersey and I conducted phone surveys of college students. The past twenty years of my professional life have been circuitous path.

While I am grateful for my broad range of marketable skills and my uncanny luck finding fascinating jobs, I’ve envied folks with a laser-like professional focus, able to immerse themselves in a body of knowledge and become a leader in an industry or organization. Most of all, I’ve envied those with a calling, with a joyful sense that their professional lives and personal interests are perfectly entwined.

Lately though I’m noticing that even in my own life, the lines between the personal and the professional — and even the political — are becoming blurred. My experience advocating for my son’s medical, behavioral and cognitive needs have actual street value, and I’m being paid to pull up a seat to the table and share what I know. The work, although not directly, is funded by policy which I in some insignificant way have tried to help sustain. Through this work, I learn of resources which will directly benefit my son and family. Suddenly, it’s all of a piece. And I like this feeling.

I’m not ashamed to say that I didn’t set out to do this. I don’t think most disability advocates did. We were all just out there, doing our thing, being a waitress or a salesperson or a book keeper, when along comes this wonderful child that changes everything. And suddenly, the Personal is Political is Professional.

Posted in special needs parenting | Tagged , , , | 2 Comments

Durga Tool #7: Google Scholar, as symbolized by Q

Posted on February 1, 2012 by

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.

Back in the day, when my son’s medical symptoms and developmental delays started slowly revealing themselves one by one, I received the following advice from several of his doctors:

Don’t start Googling.

While this advice may have been given for job security or to prevent a lot of “needless” requests for referrals, I think it was grounded in some compassion and consideration for my mental health. Medical information on-line is often: 1. hard to decipher, 2. dire and distressing, 3. contradictory, 4. controversial and predatory, 5. just plain wrong, and sometimes 6. all of the above. They suggested I take a more concierge/secret agent approach, bringing my questions to them and letting them feed me info on a need-to-know basis.

For years I was happy to comply. I was in full-blown denial, dysfunctionally optomistic, busy and exhausted caring for two small kids. The less bad news, the better. Consciously, I reasoned that they were the experts and if there was something worth knowing, they would tell me. I sensed that I could lead them down the wrong path and I didn’t want to be a distraction. But mostly I was in denial and content to stay that way.

But as my son grew and the picture got more complicated, the doctors started sending mixed messages. They’d start sentences with, “You’ve probably seen this on-line…” and “I’m sure you’ve already read about this on the internet….” What happened? It was as if policy had shifted and someone forgot to send me the memo.

At some point it finally hit me: I am ultimately culpable for my son’s well-being. No matter how many experts I recruit to our team, I am the one who will be held accountable and everyone else is assuming that I’ve got the big picture. (This insight is a blog post — or book or lifetime of practice — in and of itself.) I couldn’t stay away from the internet any longer, and a few years ago I finally gave in and started poking around.

You know what I found? Absolutely nothing useful. While medical websites can be slightly helpful when you know what to look for or if you have a very common diagnosis, my searches brought forth no fruitful results. I knew there had to be lots of academic papers from reputable journals out there, but my searches seemed to take me to useless sites that all seemed to be cutting and pasting information from the same vague source.

This fall, I finally learned about Google Scholar, a Google search engine that only searches academic and scholarly articles. I learned of it in a completely roundabout way; no doctor had ever shared it as a resource. (Why were you holding out on me, docs?)

In that moment, I felt like James Bond being given the cool gadgets from Q, the hidden camera in an average looking pen, the undetectable knives that shoot out from the wheels of my car when I press the cigarette lighter. And now, I give it to you.

What we do with that research — how to decipher it, how to judge its worthiness, how to not get overwhelmed by it — is information for another day. But in the mean time, here’s another tool for the toolbox.

Any other resources out there for evidence-based, sound research? I wouldn’t be surprised. If so, please share!

Posted in developmental disability, genetics, special needs parenting | Tagged , , , , , , | 4 Comments

Durga Tool #6: Synchronicity, Luck or Fate (whatever it is, I’ll take it!)

Posted on January 26, 2012 by

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.

Well, it’s official. The blood test results are in and my son does indeed have a new gentic diagnosis as I wrote about suspecting a couple of months back. It feels weird. I’m not going to go into the details of which arm of which chromosome has been duplicated or deleted here because what interests me more is the universality of the experience of parenting a child with special needs, not the symptoms or their specifics. More unites it than divides it.

What I’ve been reflecting on instead is the event that made this diagnosis possible: the mother of boy who also has this incredibly rare syndrome happened to be sitting in the same waiting room of the same office at the same moment as me and my son. Despite years of being examined, poked and prodded by experts, it took another mom just a moment to look at my son and see some spark of recognition that led us to the truth. A different doctor, a different day, a different area in the waiting room, and we would have spent who knows how many more years in the dark. Do you have chills? I do.

Some people would call it Fate or maybe even Divine Intervention. Out of all the appointments of all the neuropsychologists in all the suburbs of the world, that we should meet is such a statistical improbability that only a divine hand can have played a part. “Things happen for a reason” is a common mantra of special needs parents and I suspect a lot of folks would say that to us in this instance as well.

Others might call it Coincidence and chalk the shivers that are still running up and down my spine to apophenia, or the human propensity to see connections between two unrelated events. I mean, it’s not really that odd that we’d be seeing the same doctor (there aren’t that many of them, probably) and the appointments involve multiple long visits. The chances that we would meet seem small but aren’t impossible.

Still others who fall in between the two extremes of the religious-skeptic spectrum might give credit to Synchronicity, or meaningful coincidence. They might even go so far as to say I attracted this mom to using Synchronicity; just weeks before, I had become very clear about wanting a rock-solid diagnosis for my son, re-arranging my life to focus on his needs, and trusting that the answers would come.

Who knows? Who cares? Whether it’s because of some divine conductor or damn good luck, I’ll take it. While it would be nice to have a definitive answer about the big questions of life, I’ll settle for the little truths. Certain ambiguities — like whether there’s a force out there looking out for me — I can handle. Others — like having a proper and accurate diagnosis — not so much.

P.S. I love a good Coincidence/Fate/Synchronicity story. Share one if you have it!

Posted in developmental disability, genetics, special needs parenting | Tagged , , , , , , , , | 5 Comments

Sitting in the Charnel Ground

Posted on January 21, 2012 by

Heads-up: This post contains some dark images, but I’m letting them out in the hopes of letting some sunlight in, shining some light onto what I’m sure many struggle with.

The moment starts out mundanely enough. Standing in line for coffee at our local donut shop, I attempt to distract myself from the racks of be-sprinkled options behind the counter by giving all my attention to silent TV monitor hanging from the ceiling. Then there it is, the scrolling headline of the mid-day news about the local schoolworker accused of sexually assaulting a student with a developmental delay, and I’m real, real gone, as Van Morrison says. An invisible hand has punched me solidly in the gut, and for the next few hours I’m walking, weak-kneed, in a terror-induced fog.

This has been happening for a while, this getting overcome by stories of abuse when I least expect them. Half-heartedly skimming down my Facebook wall, I come across a headline (courtesy of the disability organization that I apparently “Like”) about two adults with developmental disabilities who have been found locked in a basement by a couple who stole their Social Security checks.  That I do not wretch is a miracle. Or in class, watching an inspirational short film about disability reform, images of neglected “students” from an institution in the 1950′s flicker by, and it’s all I can do to get myself out of the room before convulsing in tears in the hallway.

These images come when I least expect them, when I’m least prepared. They are the distillation of my very real but unspoken terror: When I am dead, who will protect my vulnerable, trusting son from abuse? (There, I said it.)

Buddhists might say that I have found my charnel ground: the above-ground sites of ancient and medieval India and the Himalayas, where corpses were left to decay naturally with the help of scavengers and the elements. It is said that the Buddha encouraged his students to meditate in charnel grounds as a way of releasing the ultimate attachment: the attachment to one’s body and to this life itself. The practice was meant to be uncomfortable and challenging. Kind of like a spiritual Tough Mudder. Get through this and all else will be a cakewalk. Not sure there’s a “getting through” this, but I would like to be able to not burst into tears in a meeting. So it could be worth practicing.

Pema Chödrön guided us through a Charnel Ground Practice when I went to her retreat this past fall. Her advice: To build your tolerance, don’t try to stay engaged for too long. For 30 seconds at most, just be with the feeling, the terror, the rage, whatever it is and then retreat. Breathe through your nose, not your mouth, which is more likely to bring the feelings up to the surface. Stroke your arm, which does something biologically to calm you down. Think about something else. Like any muscle, over straining causes injury, sometimes irreparably so, so don’t overdo it.

I think it’s working. In the past, these images were so terrorizing that it’s one of the reasons I avoided engaging with the disability world at all. I didn’t have the capacity to handle even a split-second consciousness of these possibilities. But now that I’ve taken the leap into the deep end of advocacy and activism, these stories are everywhere and there is reason to practice tolerating them. If I want to understand how to eliminate the circumstances that make these atrocities possible from happening in the first place, I have to engage.

Part of living fully and deeply means learning, if not to get comfortable with, then to at least tolerate the presence of great sorrow without turning away. Facing our deepest fears, if only for a few seconds from time to time, we can learn to be there for each other, not get carried off by our fears, and stay present and aware of what is needed of us in the moment to make things better for all.

Posted in special needs parenting | Tagged , , , , , , , | 7 Comments

It’s complicated

Posted on January 17, 2012 by

I am having a really hard time figuring out what to make of my son’s soccer practice this past Saturday. Can you help me figure it out?

As part of our town’s recreation department’s efforts to create recreation opportunities for kids with special needs, they’ve started an adaptive soccer league. High school varsity and JV kids buddy up with kids with special needs to play casually; it’s a low-pressure hour of fun. As part of creating local friendships for my son, who now travels 2o miles each day outside of town to attend school, I registered him for the program in the hopes he’d meet some local kids.

This past Saturday was our second practice. When we arrived, a winter soccer clinic for typically developing school-aged kids was wrapping up; the kids were cute and would have been wonderful buddies for my son, who is nine and has a developmental delay, but they were rushed out of the gym by their coach, who yelled at them to get off the court to make room for our group.

My son’s program started. The participants included my son, a seven-year-old boy from a different town, and about eight adult men who were well over 40, probably from a day program or a group home. I asked the coach who the charming men were and found out they had just come for a one-time visit but were being invited back for the rest of the season. Apparently, as hard as it is to find recreation activities for kids with special needs, it is even hard to find them for adults with special needs.

So. What to think? Am I happy that we are spearheading an inter-generational, regional group that provides opportunities for all kinds of folks with developmental disability? Or does it break my heart that there are no prospective chronological peer friends here?

A little of both, I guess.

Am I proud of our soccer coach for being flexible and seeing an opportunity to let the older men stay on? Am I disappointed that the coach of the typical kids (who is also the manager of the city’s rec department) couldn’t see the benefit of letting the kids from his session stay?

Again, a little of both.

Would a parent of typical children think it’s appropriate for their nine-year-old child play soccer with a group of middle-aged men? Would I have let my daughter stay? Do I have the energy to do something about this?

It’s complicated.

Posted in inclusion, recreation, special needs parenting | Tagged , , , , , , , | 1 Comment