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!

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Sitting in the Charnel Ground

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.

It’s complicated

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.

“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!