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Posts Tagged ‘Parenting’

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.

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The daily grind of life as a special needs parent often feels like a game of Whac-a-Mole. Have you played that arcade game? Equipped with one huge padded hammer, the player attempts to hit small mechanical moles that pop out of their holes. Only one mole can be up at a time, but as soon as you hit one down, another pops up. The faster you hit them, the more there are to hit. Hit the most moles in the allotted time, and you are the winner. Free stuffed tiger to the lady in blue!

For those of you who’ve been there, you know what I’m talking about. Just as we finish addressing one issue, another comes up. Some neurology crisis arises…whack!…then it’s time for IEP negotiations…whack!…cajole our way to a new bus driver…whack!…and it’s time for another surgery…whack!…and the game goes on and on and on.

This past week we saw a new specialist in a branch of medicine we haven’t encountered before. It’s been on my to-do list but we just had so many other pressing challenges to deal with — failure to thrive, regression at school and the death of my dad to name but three. Not trying to sound like a Drama Mama, but I’m just sayin’: this particular specialist didn’t even make it out of our doctor’s recommendations and onto our calendar for five years.

So this week, as we waited in the exam room for the doc to arrive while my son ripped his collection of outdated periodicals to shreds, I reflected on how I’m just whacking away…but kind of grateful that our situation has changed enough that I could even contemplate sitting in this particular office at all.  Another tiny wave of gratitude arose when it hit me that some things can wait. Everyone isn’t so lucky. What happens when all the moles pop up at the same time? One only has one mallet.

Of course, seeing the specialist this week (whack!) led to another referral and another specialist. More whacks to come. But I’m aiming to win that giant panda hanging up at the rafters and I can do this for a long time.

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You don’t know how it feels to be me.” Tom Petty

Community is a wonderful thing, a place where we feel a deep sense of belonging, a place where we feel seen.  The special needs parenting community has been particularly healing for me. Connecting with people who understand my challenges, my fears and my anger releases or lightens those very same emotions simply through the act of having them observed and acknowledged by someone who I believe understands them. Realizing that instead of just a “me” there is an “us” is a true blessing.

The trouble is that with every “us” there comes a “them.” By finding comfort and community with those who understand what it’s like to be me, I’ve been drawing a ring around the “us.” While I’m not exactly banishing folks who haven’t shared my experience to the space outside of the circle, I’m unconsciously not including them.

This weekend I was on a meditation retreat with the Buddhist nun and wonderful teacher Pema Chödrön. At certain points throughout the weekend, she invited questions from the audience. An audience that I realize now I saw as “them.” People approached the mic, shared their stories, sought advice. People who had no idea about my particular flavor of pain, but who clearly had their own: addictions, abuse, trauma, violence, isolation. It was impossible to not expand my circle to include them in “us.” Our pain is all the same, Pema pointed out. Only the storylines differ.

When I am in pain, I feel isolated, cut off and invisible. Why would I want to inflict that pain on someone else? It struck me that placing someone outside my circle was an act of aggression, of causing that very same pain. It’s a little embarrassing and ironic for a person who declares she wants everyone to be included.

“How did I get so lucky to have my heart awakened to others and their suffering?”

–Pema Chödrön

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A few weeks ago I wrote about the luscious, feet-up summer I was having. The contrast between last month and this one couldn’t be more stark. Not only is it back-to-school for the kids, but back-to-school for me and a big mental transition out of a period of grieving for my father and my role as full-time case manager for my son with special needs.

Hear that grinding noise? That’s the sound of me switching gears rather ungracefully, from first to fifth and back again without completely depressing the clutch. As I work through the tasks of coordinating new childcare routines, figuring out how to be a student in the 21st century (there are no Trapper Keepers on this side of the millennium),  swapping summer clothes for fall, getting used to my husband being away for travel more often again — I am a hot mess. It is not pretty.

In the midst of all this busy-ness, I committed one of the cardinal sins of special needs parenting (and honestly, parenting in general…no, make that life in general): I decided I was too busy to take care of myself.

Self-care for me is the stuff that builds my capacity for this intense life, increases my strength, stretches me and makes me grow. It is not glamorous or even pampering; it is sometimes sweaty, sometimes painful, sometimes boring, often the last thing I want to do with my limited time and energy. It is more akin to the “wax on, wax off” training exercises that Mr. Miyagi had the Karate Kid do — motions that, when done often enough, become part of muscle memory, protective stances deeply rooted in habit and graceful in their economy of movement. Practices that bring me into my body and present moment and hopefully keep me there long enough to fix a couple of problems, give someone a hug and have a laugh.

It started out that I told myself that I didn’t have time to go running because I was too busy catching up on a summer’s worth of email. Then, I couldn’t go to yoga because I was too busy getting ready for school. I couldn’t plan or cook healthy meals because…you guessed it, I was too busy. Eventually, it wasn’t just that I was too busy, but I was too tired, too.

An occasional skipped workout — what’s the big deal, right? Isn’t all of this focus on self-care really just self-indulgence? Maybe for some, but for me, not taking care of myself quickly spirals into unpleasantness towards for the people I care most about, my husband and kids and my mother: I become critical and I raise my voice. I hold others responsible for my emotions. (“Don’t make me angry…you don’t want to see the Hulk when he’s angry.” That kind of thing. Real nice.) I overextend myself, get overwhelmed and anxious, which I strangely compound by trying to distract myself from by going on-line and taking in even more mindless information. I also tend to not pay attention to details and make mistakes which cost me more time and energy.

When looking at the costs of not taking care of myself, I see that self-care is not self-indulgent. It is a responsibility. For the sake of my family, my friends and my community, I can’t afford not to.

What is sort of confounding to me is just what a huge amount of self-care I, a bundle of anxieties and distractions, require. No two people require the same amount, but when I look at the list of just the basic self-care maintenance activities that are needed, it’s almost absurd:

  • Physical: run twice a week, yoga class twice a week, some form of activity (walking or biking instead of driving) on other days; plan and prepare healthy meals
  • Mental and spiritual: attend weekly talks at my local insight meditation center and meditate daily at home for 30 minutes; make some art once a month; step away from my phone and computer every day
  • Emotional: connect with my husband and kids every day; go to therapy every other week; blog once a week; sketch or write in my journal as needed; get together with a friend (without kids) once every other week; read books and blogs by and about special needs parents

I get up at 5am to meditate and journal. I go out after the kids go to bed for yoga and to see friends. I squeeze in the runs when I can; I’m no longer ashamed to show up to school pick up drenched in sweat. I leave early for my meetings so I can bike. At times it seems so unfair that in addition to IEP meetings, doctors’ appointments, therapies at home and everything else, that what this life requires of me is a tremendous amount of time and energy simply on maintaining my sanity.

But this morning, as I headed over to the yoga place around the corner, despite the fact that I have a million other things to do, I remembered there’s a brilliant saying from AA (Alcoholics Anonymous): “It takes what it takes.”

It takes what it takes. As in, yes, to get sober sometimes you do need to check yourself into a hospital, move, get a new job, leave your spouse, get new friends, go to a meeting every single day for the rest of your life.  Some people need more than that. Some will need less. How much does it take to get sober? It takes what it takes.

How much does it take for me to live without be angry, stiff, whiny and overwhelmed? Apparently a fair amount. It takes what it takes. For all of us. Even for me.

Anyone out there care to share what it takes for them? Can you share what you’ve done to make time for self-care, especially when you’re busy? I could really use some inspiration!

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Things have been silent on the blog front lately, not for any particular reason other than that I’m taking a little break from trying so hard. A time-out of sorts — a pause, a respite, a recess. Dead air, as they say in television.

As Mother Nature unabashedly does her thing, pouring out verdant lushness, ripe peaches and tomatoes spilling out over bushel baskets at the farmers’ markets, I’m taking a moment to stock up on sunlight, fresh air, sand between my toes.

It’s not just on the blog front that things are quiet, but on the whole special needs parenting front too. My family’s needs aren’t pressing right now and there is space and ease for hanging out. After a year of steady diligence on many fronts — academic, behavioral, medical, psychological, social — I have declared myself off duty, off the clock, off the hook and goofing off. I’ve got my feet up. I’m letting the piles pile up for a while, letting go of needing to make progress, letting go of striving — the compulsion to be moving toward something, anything, away from here and now. It is deliciously restorative.

And yet there is an undertone.

Without wanting to seem pessimistic or dramatic, this break has a quality of a cease fire, a deliberate yet temporary break in the battle. It’s not that I consider myself at war with anyone or anything in particular; though it is tempting to allow myself that black-and-white self-righteousness of seeing my life as a fight against the enemies of a flawed healthcare system and an underfunded special education system, I’m capable of more complexity. But walking this path, regardless of the fact that I wouldn’t change it for the world, has its costs: fear, exhaustion, avoidance, denial, grief, frustration at not being in control, embarassment that I haven’t yet learned that no one can be.

This intermission to me is like those late afternoons Homer wrote so often about in The Iliad when Greeks and Trojans agree to put down their weapons so that they can clear their wounded off the field, bury their dead and patch their soldiers up for tomorrow. Each evening they would return to their ships or their walled city, roast a sheep, sing songs or play games, but fully aware that the next morning they’d get up and do it all over again, if they were lucky.

With this intermission I’m not just goofing off — I’m taking stock of the costs that have been made so far, awake with the knowledge that soon enough the troops of patience, compassion and courage will to suit up and be mobilized again. There will be IEP meetings, eligibility interviews, calls to my state reps, and long waits in doctor’s offices for very few answers.

Just…not today. Tonight after we put the kids to bed my husband and I will meet out on the deck for a drink and we’ll put our feet up. I’ll show him this video of vintage movie intermission clips, and we’ll talk trip to the beach for later in the month. And goof off.

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