Buddhism, Family, Marriage, Meditation, Mindfulness, Parenting, Special Needs, Uncategorized

Acceptance is not giving up..

Very early on right after Mae was diagnosed I had a constant and overwhelming desire to try and fix Autism.  I was convinced that there would be a doctor, a supplement, a therapy that would unlock the words from my child’s mouth.  We traveled from New York to Boston consulting every expert we could. We tried every combination of nutrients and foods imaginable.  Every conversation, every thought was consumed by the need for answers.  I struggled at the time to reconcile this endless search with my Buddhist studies.  Those studies told me to live in the moment, to be present with whatever arises, to learn to love what was right in front of me.  I wasn’t sure how to align the need to have answers about my child’s condition and my belief that honest and loving acceptance of what is in front of you is the best way to live.  

 

We don’t really understand acceptance in Western culture.  Or at least I didn’t.  I felt like accepting my daughter’s diagnosis was a kind of capitulation.  Acceptance felt like giving up, so I resisted it.  We spent every penny we had. We turned every meal into a therapeutic endeavor. We sued our school district so she could go to private school. We watched her like hawks waiting for evidence of improvement. Our sense of wellbeing was entirely wrapped up in whether or not Mae had a good day or a bad day, on whether or not she was “improving.”

 

After almost two years of battling with an enemy of our own making we couldn’t do it anymore.  We had no more money for therapies. We were tired of meals whose success hinged on whether or not she sat and used a fork. We just wanted to enjoy our family again.  So we stopped. Instead of trying to solve the “problem,” we worked on accepting our daughter for who she was.  She stopped being a diagnosis and became our daughter again.  It doesn’t mean we don’t work to make sure her life is filled with activities and people who nurture and care for her, or that we don’t high five her when she joins us at the table, or demand that she use her limited language skills whenever possible. We do all those things.  It also doesn’t mean that I don’t occasionally get sad about the things she could be doing this summer if her brain were wired just a bit differently.  I would be lying if I said I never think about it.

 

In our case, acceptance was not capitulation. It was actually a very conscious and loving gesture towards both ourselves and our child.  Learning to accept her diagnosis and what it meant both for her and for us as a family liberated us from our own expectations.  I have found that the more willing we are to accept the truth of difficult situations the more easily we can adapt to them.  When we resisted the hard truths of Mae’s diagnosis by insisting we could fix it we were blind to what was really in front of us, which was a beautiful little girl with a twinkly smile and an awful lot to teach us.

Family, Meditation, Mindfulness, Parenting, Special Needs, Uncategorized

Want to know what it’s really like…

Autism for me has a perfect black page-boy haircut, it has rounded cheeks and long eyelashes. Autism for me bounces in and out of rooms, ripping and twirling paper.

Autism never sleeps through the night

Autism means that my child cannot tell me if her stomach hurts

Autism has made me fierce and difficult in the eyes of many school administrators.

Autism means I have been changing diapers for more than a decade

Autism means I run a small home-based pharmacy

Autism doesn’t make me sad anymore although some days it makes me tired

Autism means I will never have an empty nest

Autism means nothing scares me except the day when I can no longer care for my child

All over this country parents go to bed at night knowing that there is no system to support their children as they age.  April is Autism Awareness month, I am never unaware.  

I would ask that if you really wanted to be aware of what it was like to have a child with Autism, look at your children, your beautiful, talented, amazing children and imagine what it would be like if you knew that the world had no place for them.  Look at your baby, your toddler, your tween, maybe even your adult and imagine for a moment that without you they couldn’t survive.  That is what it’s really like to be aware of Autism.  

Buddhism, Family, Marriage, Meditation, Mindfulness, Parenting, Yoga

By Any Means Necessary

As school vacation ended this past week, I was desperate for my children to go back to school.  When we have all been in the house for a little too long there is an itchy, restless feeling around the edges of everything they do.  In my body it manifests as massive fatigue. When they were all home it felt like a huge effort to do anything, the second they left I found myself energized and able to address my to-do list.  

I don’t like that itchy, cranky feeling, it feels like a lack of gratitude.  Sitting in my warm safe house with my three kids and my loving husband and feeling unsatisfied seems fundamentally wrong.  I know I only feel this way because I am desperate for us to return to the routine that comes with school and work.  Even knowing that, I search for an antidote, I remind myself how lucky I am, I sit for meditation, or go for a run.  Truly there is only one thing that really helps, and for me it is reflecting on the alternative.

Last New Year’s, Colin wasn’t feeling well.  He was tired, stressed and his back hurt.  In fairness, we are both tired and have been since Ben appeared in 2004, so when he complained of exhaustion, I ignored it.  When he talked about his back hurting I told him to stretch, put your legs up the wall and breathe deeply.  When he said he was going to see a doctor, I shrugged.  The doctor ran a million tests and they were all inconclusive. Colin’s face  was slowly turning gray but I couldn’t see it.  I was too busy thinking about the details of our life.  The kids’ schools, our leaky roof, our muddy driveway, my own aches, pains and frustrations.  I was so engaged in our day-to-day that I wasn’t able to see that my husband was fading away.  Or maybe I didn’t want to see it.

In February he had an angiogram, and they found and cleared a significant blockage, one they call the “widow-maker.” At the time I just focused on how lucky we were. I heaped praise on Colin for seeking out a second opinion. I talked about the miracles of medicine and joked that he had eaten his last cheeseburger.  We have a habit in our family of turning difficult realities into punchlines and this was no different.  He would joke that with his new “gear” as we referred to the stent that he was like a newborn; he could throw himself into bad habits with gusto.  I would feign horror, knowing that we would find some easy middle ground.

It wasn’t until the end of this year that I really thought about how differently the story could have ended.  There are many skilled practitioners of Buddhism who can find gratitude without thinking of what could have gone wrong.  I am not one of them.  As 2015 ended, I found myself thinking more and more about what could have happened, about my life without Colin.  Not just the practical financial aspects, which would be grim at best, but also the impossible loneliness I would feel in his absence.  When I find myself irritated by the hundreds of water glasses he manages to use and leave behind in a day, or the peanut butter with a knife sticking out left on the counter after lunch, or the fact he never quite remembers to close the fridge….  When I see those things and start to think to myself “what the ????” I think about the other ending we could have had to 2015, the ending where my husband got so gray that he disappeared altogether.  When I think about that I don’t even see the water glasses or the peanut butter.

One of my favorite phrases in Buddhism is “skillful means.”  It is used to describe the many different methods available to people as they search for truth.  The longer you practice, the more clear and efficient your means become.  It isn’t especially skillful to appreciate the life you have by imagining the worst case scenario.  But for now it’s what i am working with.  I cannot seem to learn the lesson enough times that the real treasures are hidden in the most ordinary days.

Buddhism, Meditation, Mindfulness, Parenting, Yoga

Nothing interesting happens…

I have this battered green spiral notebook that I have used for all my teacher trainings and meditation retreats. It is in many ways my spiritual brain. It sits on the bookshelf next to my desk and I pull it out periodically when I am feeling stuck. Every yoga sequence I have ever really loved is scrawled into it, as well as bits of wisdom from all the teachers I have worked with. At one point, Peter got his hands on it and covered a few pages with some construction vehicle stickers and elaborate drawings of rocks. He must have been about three when that happened.

Today while leafing through it a phrase that I had scrawled in the margin caught my eye. In my barely legible script it read “nothing interesting happens in your comfort zone.” I have been turning the phrase over in mind ever since.

I wondered about the context of the phrase. I bet it was in the spirit of encouraging yoga students to push themselves a bit. To try something new and surprise themselves. Or was it part of a meditation training, a nudge to connect with our students in a more meaningful way. Did someone else say it, or had it occurred to me? The rest of the page is blank, so I don’t know how that phrase ended up in the margin, a footnote on a blank page. It made me think of Ben off to middle school and pushed out of his comfort zone whether he likes it or not.

All of childhood seems to have built into it this concept of constant change. Even my children’s bodies are forever stretching and growing, their comfort zone as challenged as their pants to keep up with the endless transformation of their limbs and identities.

I feel a little envious of how, within my children’s lives,there is the built-in expectation that they will grow and change, the idea that a comfort zone is more of a launchpad and less of a trap. I would like to think of my own comfort zone that way, a safe starting point for unlimited potential. As adults our lives and habits can easily become fortresses Old relationships and safe places keep us from building new connections and stretching ourselves. We retreat to the familiar, the safe, the stable. These things are not inherently bad; we all need a strong foundation. Ideally, it should be one that supports us enough that we can safely test the edges of where we are comfortable.

You don’t have to jump out of airplanes, or start middle school to challenge your comfort zone. It can be as simple as smiling at a stranger, picking up a new book, letting go of an old resentment. We hold on to all sorts of ideas, places and things because we think we need them to feel safe. When we hold on to them too tightly they become walls that keep new ideas and new information out. It is only when we are open to peeking around the edges of our life that we will turn our comfort zone into a launchpad rather than a stop sign.

Family, Marriage, Parenting, Special Needs

I am a polygamous parent…

katherinemaeI am a polygamous parent.  We all are to some degree.  If you have more than one child you know they need different parenting styles and norms.  In our case having two sons who are neurotypical or normal and one daughter who is severely autistic, we are almost constantly managing two distinct families.  We are lucky in that our sons adore their sister and vice versa.  Since the moment they left for sleepaway camp she has insisted on spending hours sitting in the car.  Despite the fact that she can’t speak she understands that eventually that car will bring her back to her brothers wherever they may be.

As parents, the experience of two of our children leaving for a month is really strange.  There is the constant and vague feeling that I have misplaced something.  The chores are greatly diminished.  Both the dryer and dishwasher must be secretly wondering why they are experiencing this reprieve from constant activity.

I miss my sons, but the opportunity to be just a special needs parent, to not have to toggle back and forth feels like a break.  I can cater completely to Mae’s needs.  I can sit with her in the car in the driveway, or hold her hand while she eats, or take her outside so she can tap and touch every surface of our deck.  I can do all of this without feeling like somewhere a boy is bored or needs help with his homework.  Our boys are safe and happy, camping and swimming off the coast of Maine, while we are able to live on Planet Mae and not let anybody down.

The hardest moments are when the boys have disputes that need settling or hurt feelings from an event at school.  They will come rushing in the door, desperate to tell me their tales.  If the timing is right and Mae is at ease, I can listen completely and offer advice or just my lap.  If the timing is wrong and she is upset, they will strain to tell me their story over her wailing and I will strain to listen, with all of us unable to ignore the friction between the two worlds that coexist in our house.

Being a polygamous parent is hard. It involves managing different school systems and communities. It requires babysitters for family dinners or trips to the movies.  The upside is that when I have the luxury of only parenting one child in her very specific way, it feels like a delicious holiday.  If I was left with only one of the boys it would be excruciating; he would follow me around endlessly wanting me to fill the shoes of the brother who was away at camp.  However, with Mae she is thrilled to have us live in her world, to have our house be quiet and predictable.  It’s emptiness means more space for her to roam on her missions whose purpose is known only to her.

We will all be delighted to see the boys, and Mae more than any of us.  She keeps going up to their room as if they are hiding under the bed or something.  But in the meantime I will enjoy not having to change gears, I will live in Mae’s world with no sense that I am letting anyone down and it will be lovely.

Buddhism, Family, Marriage, Parenting, Yoga

It’s all relative

photo (11)When a house is filled with young children it vibrates with movement.  Even when they are absent their clothes swirl in the dryer, their dog snores on the couch, their toys wait patiently on every available surface.  I have found that it is easy to get caught up in the movement, particularly if both parents are working.  There is always something to do:  a meeting to attend, a room that needs picking up, an appointment that needs scheduling, cupcakes that need to be made…..The days seem to gain speed until all of a sudden they are years.  I remember holding Benny once when he was small, it was two in the morning and he was on an elaborate sleep strike.  It felt personal, as if his 8 or 9 week old self was deeply committed to disrupting my sleep, potentially forever.  I was giving an internal finger to all those well meaning people who had looked at my newborn and said “enjoy it, it goes so fast…” Not at 2 in the morning it doesn’t…..

Of course, now I look at his long arms and legs, his eleven-year-old self, and it does seem to have gone by in a flash.  Those two a.m. meetings of ours feel like yesterday, and another life all at the same time.  A very wise friend said to me once after we had finished talking about how exhausted we were by our toddlers, “But this is the good stuff, when we put our children in bed at least we know where they are…” I hear that phrase so often in my head, “this is the good stuff.” she was right, this busy-ness, this intensity, this constant change, this is what a life is.  The catch is, that we have learn to pay attention to it, we have to learn to slow down within the movement and the busy-ness to be able to really appreciate it.

In Buddhism it is an accepted principle that there are two realities or two truths.  There is relative truth, which is what we think we see, the whirlwind of the every day, and there is absolute truth which is what exists underneath all of that.   it is the reality that we and everyone we love are just temporary, existing for a short time in the same place.  For me parenting was the first time I really thought about absolute truth.  My own mortality and that of my children weighed on me.  The thought of something bad happening to them makes me close my eyes and hold up my hands, just the thought of it inspires deep physical reactions.  As the mother of a child who will probably never be able to live independently, my own mortality became even more of an obstacle.  On more than one occasion I have thought to myself, I have to figure out how to live as long as she does so I can take care of her, she is 8 and I am 40….it’s unlikely I will live to 120.

The relative truth of parenting, the small successes and failures, “he sleeps through the night, and eats green vegetables,” give way to “he reads, and has friends.”  He complains mercilessly about homework, doesn’t make a team, has his heart broken, each moment feels enormous and real, and defining while it’s happening. They should.  This is the good stuff.  The absolute truth as I experience it is within the relative truth: it is allowing each of those moments to really sink in. It is not trying either to hold on to them or to ignore them, but to be fully present with them.  The absolute truth of my life exists in all of the relative details, in the way I make my bed, or the dinners we eat.   The amount of attention and care that we bring to the ordinary is what makes it come alive. 

Family, Meditation, Parenting, Yoga

Making peace with quiet……

When I first started teaching Yoga, I would drown my classes in detail.  I had learned so much and I wanted to share it. I was also using mountains of words to hide my insecurities about being a new teacher.  The more comfortable I became holding the space for my students the less  instruction I gave.  It took time to get comfortable with leaving gaps, moments of quiet to allow  people to create their own experience. I had to learn to trust the silence.
It’s the same in relationships.  When we meet new people it is harder to leave open space in conversation. At least for me, I fill the space with tsunamis of words and questions.  There is no greater compliment that I can give someone than to allow for silence and space.  I have tried as I get older to lean into that quiet space in relationships more.  It is a funny twist of personality to  think I always need to take center stage…I don’t.
We have so many ways to fill silence, often in my house music is playing while I read emails and carry on a conversation.  That is the opposite of silence and of leaving space.  I am trying to make a practice out of not filling the space.  Applying the lessons I learned teaching to other aspects of my life, will I be able to leave space in conversation?
I notice that when I leave more space for quiet in my life, I am also less busy.  I don’t feel the urge to be moving constantly, I actually am able to do less. It seems that when my mind and
mouth are moving quickly my body follows, I busily move from task to task with little awareness. When my mind and mouth are a little more quiet and spacious my body feels more at ease.  As with almost everything it is about balance.  Sometimes I need to be fiery and animated and busy, and sometimes I don’t. For me my natural state is one of action, it simply takes a little loving awareness to know when to just be still…..and quiet.