Overtaken or working through?

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.

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

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!

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

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!

“Let there be peace, welfare and righteousness”

Martin Luther King leaning on a lectern. Deuts...
Image via Wikipedia

Reflecting on Rev. Martin Luther King, Jr.‘s contribution to peace  thought I’d share a blessing by Hagen Hasselbalch which I found in Earth Prayers. It so beautifully captures the open-armed ambitions of the peace movement inspired by folks like Dr. King: the desire for justice, for access, for respect for each other and the earth.

Let there be peace, welfare and righteousness
in every part of the world.
 
Let confidence and friendship prevail
for the good of east and west
for the good of the needy south
for the good of all humanity.
 
Let the people inspire their leaders
helping them to seek peace by peaceful means
helping them and urging them
to build a better world
a world with a home for everybody
a world with food and work for everybody
a world with spiritual freedom
for everybody.
 
Let those who have the power of money
be motivated by selfless compassion.
Let money become a tool
for the good of humankind.
 
Let those who have power
deal respectfully with the resources of the planet.
Let them respect and maintain
the purity of the air, water, land and subsoil.
Let them co-operate to restore
the ecological soundness of Mother Earth.
 
Let trees grow up by the billions
around the world.
Let green life invade the deserts.
 
Let industry serve humanity
and produce waste that serves nature.
 
Let technology respect
the holiness of Mother Earth.
 
Let those who control the mass media
contribute to create mutual understanding
contribute to create optimism and confidence.
 
Let ordinary people
meet by the millions across the borders.
Let them create a universal network
of love and friendship.
 
Let billions of human beings
co-operate to create a good future
for their children and grandchildren.
 
Let us survive
In peace and harmony with Mother Earth.

Peace.

Show me love

Everyone shows love in different ways. Children with special needs are no different in that regard, maybe even hardwired to be more different than usual. While Williams Syndrome is associated with a “cocktail party personality,” one of the defining characteristics of Autism Spectrum Disorder is a challenge to make typical social cues. Down Syndrome literature is full of descriptions of bubbly personalities. Not to mention individual personalities that create an endless rainbow of lovey-dovey possibilities. When it comes to showing love, these kids are all over the map just like the rest of us.

My son has a developmental disability described in the literature as being associated with “a gentle personality,” but he’s not very affectionate. Not that most nine-year-old kids are, but the frequency and ease with which my daughter can wax poetic on how much she loves her family provides a stark contrast at times.

Mostly I’m fine with that, despite my hallucinatory desire for parenting to be one long version of “Guess How Much I Love You.” There are small, subtle signs and I take them where I can get them. Like holding hands on the sidewalk because he’s nervous about falling. Like the 16-step hug I get when carrying him up to bed at the end of a long day. Every once in a while he’ll climb into my lap after dinner and lean back for a few seconds, letting his body sink into mine; I sit so still, not shifting, barely breathing, soaking it up.

In my needier moments, I flat out ask for affection, sometimes with success, most often not. In the minutes before he falls asleep, when he sometimes seems so clear and able to recall details about his day or ask questions that reveal an inner world much richer than I give him credit for, I’ll take a chance and ask if he loves me, hoping that in this moment of quiet and clarity he’ll indulge me. Last night, as we lay in the dark after reading the Best Buy flyer for the 100th time, I gave it a shot.

“Do you love me?” I asked. “Yes,” he sighed. “How much?” I prodded greedily. “One more minute,” he replied. I was confused and a little disappointed. Then I realized that in his life, “one more minute” are often the best words he can hear — words of permission to continue with a favorite activity after his protest over my request that we stop. As in: “Time to turn off the TV,” I’ll say. He’ll whine. “OK, one more minute.” Like that.

Pushing my luck, I asked, “You love me one more minute?”

“Yes,” he said, sighed, turned his back, and fell asleep.

Dear sweet boy, I love you one more minute…and back.

No big whoop?

The special needs blogosphere and social media outlets are abuzz about this recent Target ad featuring a boy with Down Syndrome. This kid is cute. Really cute. It’s great to see him there.

The big news isn’t the fact that he’s in the shot; what people seem to be focusing on is the fact that Target didn’t make a big deal about it.

I wonder, though, how they could have “made a big deal” if they wanted to. Send out press releases? Add a little arrow pointing to him with a label, “Check it out, we’re really cool”? I don’t think so. They didn’t make a big deal about it because simply including him is a big deal. Enough said.

I don’t mean to sound cynical. I am glad to see all kinds of people portrayed in media, there not because they’re a token representing a particular slice of the market, but because they’re just there. And if it gets folks talking about and encouraging true inclusion (like this great post by Shannon Dingle about the ad and creating inclusive religious communities), then I’m definitely satisfied.

We can celebrate this milestone. But let’s not say that we’re done, OK?

Here’s how we’ll know when we’re done: when all children are included, not only in photo shoots but in schools and communities and in real lives all around the world, when no one makes a big deal about it, and no one needs to point out that we didn’t make a big deal about it.

The most wonderful time of the year

A woman visits her rabbi to ask his advice on how to handle her family’s cramped living quarters.

“Rabbi, we only have one small room and my husband and children and I are always bumping into each other. It’s so noisy and chaotic. What should I do?” The rabbi asks, “Do you have chickens, goats and a cow? Bring them into the house.” The woman is confused, but faithfully goes home and does as the rabbi says.

A week later she returns, even more overwhelmed and in distress. “Rabbi, the house was small before, but now with the chickens, goats and cow, I can hardly think or breathe. What should I do?” The rabbi’s solution: “Send the animals out. Now you’ll appreciate how peaceful and spacious your home is.” And sure enough, she did.

Sending the kids back to school today after having them home for 10 days, I felt like the woman in the parable. While there certainly were many moments of joy and merriment, spending the week without our usual routine was tougher than usual.

I know I’m not alone. It can be a challenge for many special needs families, especially those with kids for whom routine is essential. In my case, my son’s attention span is so short and his independent play skills so limited that it’s difficult for him to be alone without tearing the house apart. (He might be small and seem pretty angelic, but he can find a lot of cabinets to empty while I run to the bathroom.) To spend a week at home with him is to completely surrender: my expectations, my agenda, even my inner thoughts. Email and texts pile up, along with laundry and toys. My patience was tested. Often it failed miserably.

Luckily, the intensity ebbed and flowed. We did have some wonderful moments watching Tintin, at the community pool, taking the subway into the city. I appreciate that they were only possible because we were out of our routine.

But today, alone in a quiet house, with the most urgent to-dos from the past week completed, with my six words strung together, with my clean hair and matching socks, I am filled with a warm gratitude to the predictable banality of our everyday routine that, I realize now, works. Not perfectly, but it works. Cheers to you, same old, same old!

Stopping the story at exactly the right moment

“And who among us would deny Jane Austen her happy endings or insist that Cary Grant and Irene Dunne should not get back together at the end of The Awful Truth? There are tragedies and there are comedies, aren’t there? And they are often more the same than different, rather like men and women, if you ask me. A comedy depends on stopping the story at exactly the right moment.” Siri Hustvedt, from A Summer Without Men

Yesterday afternoon I had one of those rare, energetic flashes of motherhood craft project coordination, inspired by Jean Van’t Hul at The Artful Parent. Because of scheduling glitches my house was full of kids and I decided that the best response was to embrace it by whipping up a batch of salt dough and letting the kids get dirty and crafty.

My attention was pulled in a million directions — helping kids get scissors, rolling pins, beads, cookie cutters, paint, carving tools, pens. It was loads of fun. In a moment of pause I turned to look at my son, who normally has great difficulty engaging in craft projects of this complexity without hand-over-hand help because of his developmental disability. And what to my wonderous eyes should appear but the perfect little ornament — sculpted, painted, deckled, layered, by his own two hands from start to finish. He declared it was for his PCA, who he insisted would be “so happy, so happy” to receive it. And his PCA will be. And right now, I am happy too.

Today I chose to stop the story exactly at that moment.

Durga Tool #5: Asking Stupid Questions, aka Beginner’s Mind

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.

When it comes to raising kids with special needs, there are a lot of gatekeepers who get to be on our “team”– insurance company reps, city officials, special ed departments, healthcare providers, state agency eligibility screeners.

Cultivating trusting relationships with these folks is essential to me; not just because I believe in the old adage about catching more flies with sugar than with vinegar, but because treating people with respect and compassion and humanity is important to my integrity. Confrontation is so draining. Besides, it’s a great opportunity to pay off some old bad karma!

Though from time to time an impasse occurs and it is tempting to lose my temper in anger or fear. Often what’s going through my mind is those situations are questions like: “How can they expect my child to make progress with so little?” or “How dare they tell me what’s best for my child?” or even “This person seems to like my child a lot and they have a lot of expertise, but why doesn’t what they’re proposing feel right to me?”

Blurting out these questions, especially in a tone of mistrust, anger or rage can damage these relationships. In my experience, even calm-headed, straight-out debating — trying to convince the person whose opinion differs from mine why their position is “wrong” — doesn’t often work either. They often shut down, get defensive, dig their heels in deeper. It’s useful in these situations to have a go-to strategy that keeps the conversation productive.

In their popular and helpful book Wrightslaw: From Emotions to Advocacy – The Special Education Survival Guide, authors and advocates Pam and Pete Wright propose what they call “The Columbo Strategy”:

“Tell the School Staff that you are confused. You want to ask a stupid question.”

Remember Columbo? With his trademark cigar and his hand to his forehead, he’d give his suspects plenty of rope with which to hang themselves in the form of one “stupid question” (usually when his hand was on the door and he was about to leave). Always friendly, never confrontational, he’d play the seeming fool before tripping them up in their own lies.

Employing the Columbo Strategy, you can sometimes bring the team around without having a head-on confrontation. Telling educators and other helpful people that you have a stupid question usually brings out their desire to help and mentor. I must admit I’ve used this technique successfully in meetings to illicit an increase in resources without having to ask for it directly.

The problem for me with this technique is that it feels duplicitous and can make people feel “handled.” The key is to keep a curious, neutral tone and to actively listen to their answer.

In Zen Buddhism, this state of openness and curiosity is referred to as Beginner’s Mind. In this space, one has no preconceived answers, only an eagerness to learn. While this might seem like a powerless posture to assume in a negotiation for something as important as your own child’s needs, it can be exactly the opposite. It doesn’t create defensiveness in others because it is at its heart an open, inclusive, team-oriented state.

Beginner’s Mind can reveal a lot of illogical holes in systems. Asking “why?” over and over again, when it leads to responses like “Because that’s the way we always do it,” or “Because we don’t have a budget to do any more,” is an extremely effective tool, especially when you simply let such answers hang in the air.

There are no guarantees of course. Each situation calls for its own approach, but having a sincere beginner’s mind is never a bad starting place, in my experience.

A new perspective on sinking and swimming

Other people’s dreams can be so tedious, I know, but it can’t be helped.

I’m at a support group with other parents of special needs kids; I can’t see the other participants (am invisible to them, too) because the room is all obstructed views. I ask if we can re-arrange the seats, but am told that I don’t need to be there, this meeting isn’t about me, I seem to be doing fine and this is a support group for people with urgent issues, but why do I ask, they wonder, do I need to talk? I burst out crying, “I ALWAYS need to talk,” and I’m whisked away to another part of the room before I infect the others with my hysteria.

I am led to a table surrounded by a Greek chorus of special needs parents who in real life know my heart the best, and I plead “When will I need to stop talking about this?”, embarrassed, ashamed that I’m not cool about all this, that my struggle means that I don’t love my son, that I’m not a good mother. “I mean, he’s healthy, he’s not in pain, he’s not sick, he’s loving, he’s great. So why do I still feel like I need to talk about this?” They absorb my words impassively. Without pause my words continue to flood out, “Sometimes I think about what it would be like if I could take all of his challenges away,” and they shake their heads vigorously, moaning, “No, no, we must never do that, it can’t be done,” but I can’t help it, the words are already out, Pandora’s box has been opened, and the only way to describe what that would be like is to show them, and I raise my face upward and gasp for breath, arms floating as if I am breaking the surface after being underwater much too long, and they all raise their faces too, and they all inhale deeply with me.

“But that’s not the right metaphor,” I said, “because that would mean that now, I am drowning.”

And I wake up gasping for breath.

———–

Last weekend I went on a retreat called “Living Beautifully with Complexity and Change.” Our theme, we were told, would be this prophesy, taken from Perseverance by one of our teachers, Margaret Wheatley.

From the Elders of the Hopi Nation
Oraibi, Arizona  June 8, 2000
 
To my fellow swimmers:
 
Here is a river flowing now very fast.
It is so great and swift that there are those
who will be afraid, who will try
to hold on to the shore.
They are being torn apart and
will suffer greatly.
 
Know that the river has its destination.
The elders say we must let go of the shore.
Push off into the middle of the river,
and keep our heads above water.
 
And I say see who is there with you
and celebrate.
At this time in history,
we are to take nothing personally,
least of all ourselves,
for the moment we do,
our spiritual growth and journey come to a halt.
 
The time of the lone wolf is over.
Gather yourselves.
Banish the word struggle from your attitude
and vocabulary.
 
All that we do now must be done
in a sacred manner and in celebration.
For we are the ones we have been waiting for.
 
————

In my dream, I was right. Drowning wasn’t exactly the right metaphor. I wasn’t drowning, but being torn apart from clinging to the shore. And the clinging, I see now, doesn’t come from me wanting him to be anyone other than exactly who he is, but from wanting the rest of the world to be a place where he — where all of us — is safe, welcome, valued. I know that to help the world become this place, I must let go, surrender to the river and its destination, and sometimes I can. There are no guarantees that the middle of the river is any safer, any less treacherous, but it feels like the right thing to do. Every moment becomes the chance to do it again, to re-commit to letting go and being in the middle, where all the important work gets done.

Here I float, in the middle of the river, in sacredness and celebration, banishing the word struggle from my attitude and vocabulary. Will you join me here? When I forget, will you remind me to let go?