No Pity, part 1

I bring along my son, who attends a special education school many miles away, when I pick up my daughter at her neighborhood school’s after-school program.

Since he started attending the far-far-away school a year ago, the ties that bind him to our neighborhood are snapping, one by one. Granted, they were never strong, as he’s always been in a self-contained special ed classroom. But hanging out in the after-school room while his sister wraps up an activity and gets her stuff together is often the only five minutes he gets on any given weekday to hang out with a typically developing child besides his younger sister or her friends, who are not his friends.

Yesterday, he and I were approached by a young boy, probably just his age, who looked at my son, turned to me, and asked, “Can he talk?” Assuring him that he could, I facilitated a little introduction. Stimulated by the bustle of the activity in the room, my son had a hard time making eye contact and speaking in a voice loud and clear enough to be understood by the boy. “Why does he talk like that?” the boy asked. Slowly and gently I replied “Well, because his brain works a little differently than yours or mine.” Piggybacking on my egregious error of talking about my son as if he wasn’t there, the boy replied, “I feel sorry for him.”

“You shouldn’t,” I told him. I corrected myself. “You don’t have to. He’s happy.”

A teacher overheard us, told the boy to go back to what he was doing. My daughter appeared, ready to go home. There was just too much commotion in the room and too much chaos in my head to know the right thing to say, so I let it drop.

Pity is just an indicator of not being aware of someone’s strengths, which in turn is an indicator that there isn’t much opportunity to get to know someone in the first place. Inclusion, inclusion…how long do I have to wait?

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My six word memoir(s)

My airwaves have been silent lately. Some new professional opportunities have offered me the chance to share my perspective as a special needs parent to such a remarkable degree that I seem to have little time and few words left for blogging.

But an opportunity came up last week to create and share my six-word memoir. Have you seen these? Six words to capture the essence of my truth. Even I have time to find six words. Granted, my truth has changed a lot in the last 10 years. Becoming a parent of a child with complex medical, cognitive and behavioral needs has gotten me access to deeper truths I wasn’t aware of before. Or maybe the truth hasn’t changed, but the vantage point has shifted.

I’ll give you a for instance. On the eve of my son’s birth, after years of struggling to get pregnant, I was convinced that all of our challenges were behind us. My memoir then:

And they lived happily ever after.

Fast forward a few years, after the two cardiac interventions, the MRIs, the g-tube surgery, the hundreds of Early Intervention sessions, the memoir would have looked something like this:

Not quite what I was planning.

Or, if I’m being totally honest, I can say that I didn’t really need all six words. Two would have sufficed:

Why me?

But something has shifted again. Diving into the deep end of the disability world, finding companionship and empowerment, spending time in silence to reflect on what my son, my family and I really need and want, going from having a broken heart to one that was broken open wide to let life in—it deserves a new headline. So here it is:

How did I get so lucky?

It’ll change, I’m sure. What’s yours?

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.

A few minutes in the hospital lobby

I arrived a little earlier than expected at our local pediatric hospital last Friday. I have spent plenty of hours there with my son, both inpatient and outpatient, or visiting friends whose children are also patients, providing plenty of opportunities for a lot of suffering.

On this day though, I’m here in a more neutral role, as a student participating in a fellowship on developmental disability. Relishing the few extra minutes and the chance to get centered before a day of lectures, I grab a private seat in the lobby to slip in a few minutes of meditation.

I’m a pretty straightforward vipassana meditation gal, usually just “gentling myself” (thank you, Jon Kabat-Zinn, for this tender phrase) myself toward awareness, moment-by-moment, on purpose, using sounds as my anchor. But on this day, with a delightful kinetic lobby sculpture clanging away, along with the murmurs of pacing parents on cell phones updating friends and family on about another long and probably sleepless night, sound is too challenging a focal point.

Leaning into the palpable emotions that surround me, I make a quick adjustment to instead try out a few minutes of tonglen meditation. Tibetan for “sending and receiving,” tonglen meditation is one in which one breathes in the pain of others and breathes out the means of their relief. Setting my handy iPhone timer, I close my eyes, put my feet on the floor, and welcome whatever pain shows up. In this place, there is plenty to be found.

On each inhalation, I draw on my own experience of my past suffering in this very space, and breathe in hot and sharp pain — not just my own but what I imagine the children, healers, the administrators and the other parents, might be feeling right at this moment. On each exhalation, I breathe out a cool relief.

I don’t know if this really helps anyone but myself. I hope that on some level this intention manifests itself as some peace in the world, some real and specific release from pain, but I can’t be sure. I do know that in being willing to open myself up to the suffering of others, I open myself up to all emotions, even good ones, peeling away the layers that create a barrier between me and the rest of humanity.

Breathing in pain, I breathe out comfort.

Breathing in fear, I breathe out ease.

Breathing in anger, I breathe out openness.

Breathing in impatience, I breathe out patience.

Breathing in impulsivity, I breathe out steadiness.

Breathing in pride, I breathe out humility.

Breathing in resignation, I breathe out perseverance.

Breathing in isolation, I breathe out connection.

Breathing in confusion, I breathe out clarity.

Breathing in despair, I breathe out strength.

Breathing in pain, I breathe out love.

May all children be free from suffering and harm.

May all families be free from suffering and harm.

May all staff be free from suffering and harm.

May all beings, including you and I, be free from suffering and harm.

Embracing Special Needs Parenthood…same great taste, but juicier

There’s a change I’ve been putting off for a long time because I didn’t want to confuse anyone, but I just can’t hold back any longer. Not being able to stop one’s self is either a sign of an incredible lack of impulse control or a wonderful burst of creativity that simply won’t be checked. Hopefully this is a case of the latter.

Depending on how you’re viewing these words (in an email, on-line, on your iPad or e-reader) you may notice that the blog formerly known as Embracing Special Needs Parenthood  looks completely different and has a new name and address, Durga’s Toolbox.

I’ve been writing about Durga for a while, why she inspires me, how I enjoy looking at this crazybeautiful life as a blessed opportunity to grow my capacity, to acquire tools and most of all, to live life fully awake. Durga reminds me that I can invite life to “bring it” and that it’ll take more than the usual skills to stay present, to stay open, to stay in the middle.

Not all entries will be about Durga’s toolbox. I just wanted to refresh the look and find an easier domain name to share. I’m also hoping to add a page about some academic research that might interest folks and I’m contemplating whether pseudonymity suits me.

P.S. To all the generous folks out there who’ve taken the time to click a “follow” or “subscribe” button: I have no idea how this address change will impact you and whether you’ll continue to get content in the way you’ve chosen. I hope it’s still coming. If not, I’ll try to find you. Your companionship means a lot.

 

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?

Scene from a breakfast table

INT. AT A BREAKFAST TABLE – MID-MORNING

The table is set for four although only two people sit at the table — an energetic seven-year-old DAUGHTER and a slightly groggy and disheveled woman, her MOTHER. At the two other place settings, a full but untouched bowl and a cup of obviously cold coffee sit opposite a rather messy, half-eaten dish of food.

Off-camera, a boy and a man are heard upstairs in the bathroom, where Week 8 of an Intensive Potty Training Siege is under way. Strains of Angry Birds and Thomas the Tank Engine spill down the stairs.

DAUGHTER

(With a maturity completely out of character, perhaps intending to distract her mother from the fact that she has covered her oatmeal in a vast quantity of brown sugar.)

So, Mother, what are you studying these days when you go to Children’s Hospital? (Takes more coconut flakes. And some raisins.) Like, are you studying to be a physical therapist, or an assistant doctor?

MOTHER

(voiceover, as she chews a bite excessively thoroughly)

Oh crap, oh crap, oh crap. Teachable moment approaching at 100 mph. Do I take it? WTF, why not. We saw the movie “A Dolphin’s Tale” this week and I think I did a good job teaching her about physical disabilities. I think I can handle taking this to the next level. Let’s do this!

(Aloud in a deceptively unaffected voice.)

Well, I’m actually studying kids who have something called developmental disabilities. Do you know what that is?

DAUGHTER

Oh, you’re studying Brother? Are you learning how to take care of him?

MOTHER

(Voiceover, completely freaking out but managing to act cool.)

What? How does she know? I’ve barely been able to refer to him as having a developmental disability to myself. I don’t even think I’ve ever used that term in front her her. Damn kids, they repeat everything. Shit, I have to stop cursing. OK, calm down. This is it! You’re going to have The Talk! Stay cool. What did the books say to do? Oh yeah, I never found those books.

 (aloud)

Well, actually, I’m studying in a class of people who are doctors and nurses and physical therapists and people like that who want to learn how to take care of kids like him. They’ve invited me to study with them because they want to hear what it’s like to be a parent of a kid with a developmental disability….They ask me about you, too. They want to know what it’s like for brothers and sisters of kids with developmental disabilities. Maybe you could come to class with me some day and they could talk to you. (Pause.) What would you tell them?

DAUGHTER

(Without hesitation)

That’s it’s hard to get my parents’ attention because they’re so busy with Brother.

 (She glances to get reassurance from her mom as she realizes that she might be saying something that’s not good.)

MOTHER

(Sips her coffee, nodding in agreement. Voiceover)

Oh crap, she noticed. OK, just acknowledge her reality, don’t try to fix it. Let her talk.

DAUGHTER

Because he needs a lot of help doing things, and he’s active and moves around a lot. And I help him, too.

(Though she has been speaking at a rapid clip, it’s clear she feels she has crossed a line and somehow betrayed her brother to the imaginary group she is talking to and begins to backpedal.)

I mean, he helps me and I help him. We teach each other stuff. I teach him things he needs to learn, like the alphabet and counting.

 MOTHER

What does he teach you?

 DAUGHTER

He teaches me that he’s been learning things at school. It makes me feel good to know that he’s learning things and growing.

(With a certain amount of surprised realization)

 Being a sister of a person with a developmental disability actually makes you feel pretty special.

MOTHER turns her head to hide her smile and watery eyes. She wants to cheer and hug her daughter; she realizes that the conversation went so well that if it was scripted it would seem fake. But she is acutely aware of the danger in praising her too much at this moment; she fears that she will condition her daughter to be self-sacrificing and ultimately resentful, which she desperately wants to avoid.

DAUGHTER too decides that that’s about all she can handle, and asks if she can have more coconut flakes on her oatmeal. Her day continues as if this conversation has never happened.