It takes what it takes

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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Siblings talk about the sibling experience

Following yesterday’s post about the importance of hearing more from siblings of special needs, someone pointed out this great video from the Arc of King County in Seattle, Washington.

Watching the video brought to mind a stressful evening last week where my daughter, who is typically developing, expressed her feelings of just how unfair it is that her brother, who has special needs, doesn’t have to do homework like her — through tears and with a great amount of screaming. This video convinced me that’s it’s time to ramp up the help she’s getting in figuring this all out.

The video is a little on the longer side at nearly 15 minutes, but a great introduction for parents, grandparents, family friends and teachers on the challenges their neurotypical kids might face. It could also be worth showing at a Special Ed Parents Advisory Council meeting or other gathering.

Families pull up a chair to the table

After years of asking myself questions like “Why am I filling out this medical form when this information is already in their computer?” or “Why does this doctor only see patients during school hours?” and other such silly observations along the journey through parenting a child with special needs, I suddenly find myself invited by a couple of well-respected healthcare institutions to share my perspective with their staff and students.

It’s quite a responsibility to be given a seat at the table among pediatricians, speech/occupational/physical therapists, psychiatrists, practice managers, social workers and policy lawyers. I am so grateful to those family advocates and disability activists who have worked tirelessly to create a culture where a parent’s experience and opinion is valued and sought out. I hope I don’t let them down. I’m also acutely aware that I am speaking on behalf of the vast majority of parents of children with special needs who feel disenfranchised and powerless; due to either perceived or actual limitations, they don’t know how to speak their mind, share their story, or give their feedback to the professionals who hold the purse strings, create the laws, implement the therapies or design the communities that impact their families’ lives in very real ways. I hope I don’t let them down either.

On the heels of us parents pulling up a chair at the table, there’s another group beginning to claim their space here too—siblings of people with special needs. As the folks who will possibly spend even more of their own lives with their special family members than parents, sometimes as adult caregivers and guardians, they have a perspective to add to the conversation. Particularly amazing to me is how aware they are of the ways this experience has shaped them and helped them grow. Their very “boots on the ground” experience with a decidedly non-parental (read: less hysterical) perspective gives their experience credibility; I know I seek out their advice to help me create a family where both of my children can thrive and feel nurtured.

As sibling groups mobilize to create support groups and education like SibShops, conduct and share research, and build their own community within the Family Movement, I just have to say how glad I am that they are here.

They also just might be more effective at educating the very folks whose tables I’m sitting at these days than I am. In blogs, at fundraising events, on YouTube, in the media and on Capitol Hill, they are savvy and persistent.

Here’s a recent example, a short but remarkable video by a teenage sister of a boy with special needs. I can’t believe how lucky we parents are to be standing shoulder-to-shoulder with her:

Durga’s Toolbox #4: My gut

Another tool in my toolbox series that helps me live with joy, courage and compassion, as inspired by the Hindu goddess Durga.

In 10th grade business class, my teacher Mrs. Goldstein taught our class a model that promised to make us more successful in life. When faced with a difficult decision of whether or not to do something, she counciled us to execute the following strategy:

  1. At the top of a sheet of paper (this was the 1980’s, so no, there was not an app for that) write down the a potential course of action to address your problem. Below it, create two columns called “Pros” and “Cons,” and brainstorm what each of them could be.
  2. Review the list and after careful consideration, select the proper course of action.

Although I can’t say I (or many teenagers) went to the trouble of pulling out paper and pen when faced with a tricky decision, but the exercise captures the essence of a very Western approach to decision making. I put a lot of stock in what my intellect — my “head” —  had to say about things and had faith that sound reasoning and reflection alone would lead to a positive outcome. In the special needs worlds of evidence-based medicine and education, Data is King.

But there are other internal sources of information available to us. Marketing managers everywhere know that we unconsciously make decisions based on our emotions and then find intellectual reasons to justify our decisions. We often refer to our heart as being the seat of our emotional wisdom, as reflected expressions like “he followed his heart,” or “she has a lot of heart.” As a parent, my heart is often the governor for much of my behavior, both good and bad — affection and yelling to name just two. As a special needs parent, letting my heart take the reigns too often can lead to excessive worry or guilt and make my behavior very risk aversive.

Lately I’ve come to appreciate a third kind of intelligence as a complement to my head and my heart: my gut. Why? When I look at a situation through the lens of my intellect, I focus mostly on quantifiable facts, and my field of vision is fairly narrow. Looking through my heart, I often take the decision which will provide short-term relief of pain but may not provide a long-term solution. But when my gut is the lens with which I view a situation, suddenly I have access to all sorts of information — in addition to my head and heart wisdom, murky hunches based on connections with past experiences and insights that my intellectual memory can’t quite put its finger on get equal say. It’s as if my gut has superior peripheral vision, able to read and react to a complex situation quickly, the way a quarterback can read a play in progress and know exactly where to get the ball.

One way I my gut shares its wisdom with me is by acting as a little voice or a milli-second of nearly imperceptable hesitation. “Don’t put your keys there or you’ll forget them,” the voice says, or “Don’t hit the ‘send’ button just yet on this email.” The challenge, of course, in this crazybusy life of mine, is to not drown that tiny voice out with distraction and mindlessness. I don’t know how many times I’ve made a mistake — from harmless ones like dropping a glass to more costly ones like trusting the wrong person — and realized that I knew all along it was going to happen but I was in too much of a rush to listen. When I am grounded in my body and present in the moment, the voice is amplified. Pausing and taking a breath, I can reconnect with this voice and ask for its guidance. Perhaps people who seem to have extra-sensory abilities are simply able to crank up the volume of this voice.

I won’t stop using my head or my heart; in fact I think my gut instinct works as well as it does precisely because my head and heart have so much experience. No need to throw the baby out with the bath water. I simply appreciate having another channel of information, one that is often dead on and incredibly quick. But don’t take my word for it — trust your own gut. I’d love to hear your thoughts…or feelings…or instincts.

P.S. In recent years, the research coming out regarding the Enteric Nervous System (the one hundred million neurons embedded in our gastro-intestinal lining) now referred to as “the second brain,” is pretty fascinating. In the same vein but coming from a completely different tradition, many mind-body schools of thought like ones who use energy fields or chakras, consider the solar plexus to be the seat of personal power and will. There’s a lot to explore here if you’re interested.